BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Hope in Focus - ECPv6.15.13//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://old.hopeinfocus.org
X-WR-CALDESC:Events for Hope in Focus
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20170101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20210314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20211107T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20220313T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20221106T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20200308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20201101T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20210314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20211107T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20220313T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20221106T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=UTC:20220921T173000
DTEND;TZID=UTC:20220921T193000
DTSTAMP:20260521T094603
CREATED:20220907T190333Z
LAST-MODIFIED:20220907T193338Z
UID:1862-1663781400-1663788600@old.hopeinfocus.org
SUMMARY:Paddle for Sight
DESCRIPTION:Celebrate the last day of summer with a paddle on the Mystic River\, benefiting Hope in Focus and research to treat blindness! \nOn Wednesday\, September 21\, the last day of summer\, join our paddle fundraiser sponsored by Adventure Mystic. Your fee includes a paddleboard or kayak\, paddle\, and life jacket. (Rain date\, Thursday\, September 22.) \nDetails: \n\nRegistration fee includes paddleboard or kayak\, paddle\, and lifejacket rental.\nParticipants must have prior paddleboard or kayak experience and are required to sign the Mystic Adventure Outdoors Sports waiver.\nRain date is Thursday\, September 22\, 2022.\nParking: limited parking is available on a first-come\, first-served basis in the lot behind Adventure Mystic. As our event is on a Wednesday in late September\, if that lot is full\, finding a spot on the street in Mystic shouldn’t be too tricky!\nPaddle time is 5:30pm to 7:30pm\, however paddlers may arrive as early as 5pm at Adventure Mystic to meet us and get set up. After 6:50 new paddlers will not be accepted.\nYetis: If you purchase the paddle ticket with a Hope in Focus Yeti wine tumbler or mug\, you will have a choice of a 1 wine tumbler or Yeti mug\, based on availability. You will also have our sincere gratitude for your additional contribution to our cause!\n\nProceeds of this event benefit Hope in Focus\, a nonprofit 501(c)3 patient advocacy organization dedicated to generating awareness\, raising funds for research\, and providing support\, education and outreach to the Leber congenital amaurosis and rare inherited retinal disease community. Leber congenital amaurosis (LCA) is a rare inherited retinal disease characterized by severe vision loss at birth. While some children are born with little or no vision\, others may have significant vision loss in the first few years of life\, stable vision for a period of time\, and then eventually complete vision loss as the retina deteriorates into total blindness. \nWe look forward to having some fun on the water while raising funds for our mission!
URL:https://old.hopeinfocus.org/event/paddle-for-sight/
LOCATION:Adventure Mystic\, 15 Holmes Street\, Mystic\, CT\, 06355\, United States
CATEGORIES:fundraiser
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2022/09/293553007_7668255136549777_4510011344863049964_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220324T130000
DTEND;TZID=UTC:20220324T140000
DTSTAMP:20260521T094603
CREATED:20220321T124948Z
LAST-MODIFIED:20220321T125017Z
UID:1708-1648126800-1648130400@old.hopeinfocus.org
SUMMARY:Let's Chat About...Opus Genetics
DESCRIPTION:Ben Yerxa\, Co-Founder & President\, Opus Genetics\n\nLet’s Chat About … Opus Genetics \n \nBen Yerxa\, PhD\, is Co-Founder & President of Opus Genetics. Founded in 2021\, Opus Genetics is a patient-first\, science-driven gene therapy company tackling manufacturing obstacles standing in the way of treatments for ultra-rare blinding conditions. Dr. Yerxa will speak about the Opus Genetics’ business model\, pipeline\, manufacturing process\, and their focus on tried and true methods. \nAbout Benjamin Yerxa\, PhD\nFoundation Fighting Blindness \nAs its Chief Executive Officer\, Dr. Yerxa is responsible for the overall management of the Foundation Fighting Blindness\, the world’s leading private funder of research on potential treatments and cures for inherited retinal degenerative diseases including age-related macular degeneration. He also serves as CEO of the Retinal Degeneration Fund\, a wholly owned\, not-for-profit subsidiary focused on making venture philanthropy investments to further the Foundation’s mission. Dr. Yerxa has more than 25 years’ experience in biotechnology\, drug development\, and in translating promising research discoveries into clinical milestones and treatments. His experience\, from drug discovery through product launches and in leadership positions\, is in the pulmonary\, oral health\, cardiovascular\, HIV\, and ophthalmology fields. Just before joining the Foundation\, Dr. Yerxa was president and co-founder of Envisia Therapeutics\, a company focused on developing novel ocular sustained delivery therapies for the front and back of the eye. Dr. Yerxa holds 60 U.S. patents. An inventor of DIQUAS™\, an innovative treatment for dry eye approved in Japan\, he has been involved in the discovery and development of investigational new drugs\, Phase 3 clinical programs\, new drug applications\, and drug approvals. Dr. Yerxa earned his PhD in organic chemistry from University of California\, Irvine\, and BA in chemistry from the University of California\, San Diego. \nREGISTER\n  \nHope in Focus is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease.
URL:https://old.hopeinfocus.org/event/lets-chat-about-opus-genetics/
LOCATION:CT
CATEGORIES:Let's Chat About ...
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220316T130000
DTEND;TZID=UTC:20220316T140000
DTSTAMP:20260521T094603
CREATED:20220224T170153Z
LAST-MODIFIED:20220224T190008Z
UID:1666-1647435600-1647439200@old.hopeinfocus.org
SUMMARY:Let's Chat About ... Self-Advocacy and Supporting Your Child's Education
DESCRIPTION:Beth Borysewicz\, State of CT Department of Aging and Disability Services; Bureau of Ed. Services for the Blind\n\nLet’s Chat About … Self-Advocacy in the Classroom \n \nBeth Borysewicz is the Vice Chair on the Hope in Focus Board of Directors\, and is an Education Consultant for the Department of Aging and Disabilities\, Bureau of Education Services for the Blind. Beth found her passion working with the blind and low vision community unexpectedly when she had a 3 year old named Sofia in her class 16 years ago diagnosed with LCA. As a Teacher of Students with Visual Impairments\, she has focused her career on teaching her students self-advocacy and exploring the Expanded Core Curriculum in fun and exciting ways. \nBeth also authors her own blog dedicated to professionals\, families and students titled\, I Love Brl (Braille) https://ilovebrl.com \nREGISTER\n  \nHope in Focus is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease.
URL:https://old.hopeinfocus.org/event/lets-chat-about-self-advocacy-in-the-classroom/
LOCATION:CT
CATEGORIES:Let's Chat About ...
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220228T080000
DTEND;TZID=UTC:20220321T170000
DTSTAMP:20260521T094603
CREATED:20220224T163631Z
LAST-MODIFIED:20220314T165303Z
UID:1652-1646035200-1647882000@old.hopeinfocus.org
SUMMARY:Hope in Focus Rare Scavenger Hunt 2022
DESCRIPTION:Are you ready for some fun? \nBack by popular demand for its third year\, this event is a great way to have some fun while driving awareness for rare disease and raising funds for treatment for Leber congenital amaurosis\, a rare form of retinal blindness.  \nGrab your family\, friends\, or co-workers and form a team of up to 5 to complete our “rare”-themed challenges.   \nThere is a suggested minimum donation of $100 per team\, but registration is free and anyone can join in on the fun. The more the merrier! At the end of scavenger hunt\, all teams who have completed their challenges by the deadline will be entered into a drawing.  \n  \nThe prize?  Hope in Focus will make a $250 donation (from the entry contributions) to a 501(c)3 nonprofit of the winner’s choosing! This way you’re not just helping Hope in Focus\, you can also help another charity that is doing important work. \n  \nDetails:  \n\nRegistration opens on Monday\, February 28\, 2022. \nOn the Rare Scavenger Hunt opening day\, Thursday March 10\, you will receive an email with the list of the challenges. We always provide more challenges than you’re required to complete so you can pick and choose which ones your team will tackle. \nTeams can register and join at any time during the event\, but to win you must complete the challenges by the deadline at midnight (EST) on Monday\, March 21\, 2022. \nWe’ve curated a list of challenges that you can complete in-person with your team\, or  with an all-virtual team. (What is Grandma doing these days? How about your college roommate?) \nYou must complete the required tasks and minimum number of challenges to be entered into the drawing to win. \nThe event takes place in a closed Facebook group dedicated to the Rare Scavenger Hunt\, with select challenges involving more public-facing social media to helps us drive awareness of rare disease and Hope in Focus.  Using the private Facebook group does two things: \n\nit allows us to track teams more easily\n(the best thing) we all get to enjoy watching other teams as they attempt TicToc dances\, tell jokes\, juggle\, and generally show off their rare talents. If you needed a reason to smile or giggle a little each day in March\, this is it!\n\n\n\n\nRegister Your Team\n  \nCORPORATE SPONSORSHIPS are a great way to engage your team in our IRD community and the work of Hope in Focus! Sponsorship is $1\,000 and includes brand recognition on our website\, in our social media (Hope in Focus’ public Facebook page\, Twitter\, Instagram\, LinkedIn)\, and in email. Please send us an email at info@hopeinfocus.org so we can get your brand online ASAP.  \nWith special thanks to our corporate supporters!\nAGTC\, Meira GTx\, Spark Therapeutics\, Editas Medicine\, and Janssen
URL:https://old.hopeinfocus.org/event/hope-in-focus-rare-scavenger-hunt-2022/
LOCATION:CT
CATEGORIES:fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220118T130000
DTEND;TZID=America/New_York:20220118T140000
DTSTAMP:20260521T094603
CREATED:20210217T175730Z
LAST-MODIFIED:20220104T223936Z
UID:1402-1642510800-1642514400@old.hopeinfocus.org
SUMMARY:Let’s Chat About … ProQR's work in treatments for inherited retinal disease
DESCRIPTION:Hope in Focus is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \nRegister for Free\nDaniel de Boer\, Founder and Chief Executive Officer\, ProQR Therapeutics\n\nLet’s Chat About … ProQR’s work in treatments for inherited retinal disease \nDaniel de Boer is Founder and Chief Executive Officer of ProQR\, which was incorporated in 2012. Daniel is a serial entrepreneur and passionate advocate for rare disease patients. After one of his children was diagnosed with a rare disease\, he started ProQR to develop RNA therapies for rare diseases. Under Daniel’s leadership\, ProQR developed a platform that yielded a diversified pipeline of potential treatments for rare diseases and raised more than $400M in funding\, including an IPO on Nasdaq. Before founding ProQR\, Daniel was founder and Chief Executive Officer of several technology companies. Daniel is also co-founder and strategic advisor to Amylon Therapeutics and Wings Therapeutics\, strategic advisor at Frame Therapeutics\, Meatable\, Algramo and a member of the advisory board at the Termeer Foundation. In 2018 Daniel was named “Emerging Entrepreneur of the Year” by EY. In 2019 Daniel was selected for the Young Global Leader program at the World Economic Forum.
URL:https://old.hopeinfocus.org/event/lets-chat-about-proqrs-work-in-treatments-for-inherited-retinal-disease/
LOCATION:CT
CATEGORIES:Let's Chat About ...
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211217T190000
DTEND;TZID=UTC:20211217T203000
DTSTAMP:20260521T094603
CREATED:20211208T162242Z
LAST-MODIFIED:20211215T210125Z
UID:1592-1639767600-1639773000@old.hopeinfocus.org
SUMMARY:A Toast to Treatments: Holiday Edition
DESCRIPTION:REGISTER NOW  \n  \nRing in the holidays when you join us for a unique blend of holiday cheer\, history and mixology\, with James Beard Award Winner Mixologist Dale DeGroff\, (aka King of Cocktails)! You’ll enjoy a live zoom presentation by Dale that includes a demonstration\, professional tips and tricks\, and the stories behind these three holiday drinks:  \nRitz Cocktail\, Dale’s version of the Ritz cocktails of Paris and Madrid\nHoliday Punch Royale\, perfect for any holiday party\nUncle Angelo’s award-winning Eggnog\, a special light eggnog (yes\, a light eggnog!) that you can make ahead and serve all season long \nDuring this event\, you’ll learn about Dale’s Lemon and Orange shrub – including what a “shrub” is to a mixologist. We’ll give you the recipe to make this ahead\, as well so you can use it as the base in your holiday punch.  \nUpon registration\, we’ll email all of the recipes to you\, so you can be prepared to mix along if you like. You can also access the recipes here. Before the event\, you will receive reminders and a Zoom link to join the live event. This event encourages cameras on – Dale looks forward to seeing you! – but you may also choose to keep your camera off. Whatever is best for you!  \nEvent sponsorship opportunities are available\, and make it possible for your entire team to celebrate with us! See the ticket purchase page for options or contact Courtney at Courtney@hopeinfocus.org.  \nWe encourage you to tell others about this event\, as proceeds benefit Hope in Focus. Your contributions make it possible for us to continue the work of our mission – funding research to treat blindness\, supporting free genetic testing\, providing counseling for individuals with inherited retinal diseases (IRDs)\, and continuing our outreach programs for the Leber congenital amaurosis (LCA) community. \nWhile registering for this exciting event\, don’t forget to reserve an autographed copy of Dale’s latest book\, The New Craft of the Cocktail!  For an additional $100 contribution to Hope in Focus\, you will receive your autographed copy of Dale’s book by mail. Proceeds from book sales will be used to advance therapies to treat blindness caused by Leber congenital amaurosis. 70% of your book purchase contribution is tax deductible. \nWith many thanks to these corporate supporters \n\n\n\n\n\n\n\n\n\n\n\n\n\n\nREGISTER NOW\nABOUT DALE DEGROFF \nJames Beard Award Winner Mixologist Dale DeGroff developed his techniques tending bar\, most notably at New York’s famous Rainbow Room\, where he pioneered a gourmet approach to recreating the great classic cocktails. DeGroff has since been credited with reinventing the bartending profession and setting off a cocktail revival.  \nAuthor of The Essential Cocktail and The Craft of the Cocktail (Random House)\, Dale’s influence in the bar world has spanned three decades. He is a partner in the award-winning bar training program\, Beverage Alcohol Resource (BAR) and founding president of the Museum of the American Cocktail. \nDale’s new book\, The New Craft of the Cocktail\, Everything You Need to Know to Think Like a Master Mixologist\, was released in October\, 2020.
URL:https://old.hopeinfocus.org/event/a-toast-to-treatments-holiday-edition/
LOCATION:CT
CATEGORIES:fundraiser
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2021/12/toast_web_banner_.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211208T130000
DTEND;TZID=UTC:20211208T140000
DTSTAMP:20260521T094603
CREATED:20211105T132300Z
LAST-MODIFIED:20211118T124510Z
UID:1564-1638968400-1638972000@old.hopeinfocus.org
SUMMARY:Let's Chat About ... Gene Therapy for LCA
DESCRIPTION:Join us as we chat with Michel Michaelides\, (BSc MB BS MD(Res) FRCOphth FACS) a Founding Member of MeiraGTx and Professor of Ophthalmology\, UCL Institute of Ophthalmology in Dept. of Genetics. He is a Consultant Ophthalmologist at Moorfields Eye Hospital in Depts. Of Inherited Eye Disease\, Medical Retina and Paediatric Ophthalmology.\n\nMeiraGTX saw statistically significant improvement demonstrated in vision-guided mobility and visual function in treated eyes compared to untreated eyes during its Phase 1/2 clinical trial of AAV-RPE65 in both adult and pediatric patients with RPE65-deficiency.\n\nRegister here: https://na.eventscloud.com/ereg/newreg.php?eventid=643280&
URL:https://old.hopeinfocus.org/event/lets-chat-about-gene-therapy-for-lca/
LOCATION:CT
CATEGORIES:Let's Chat About ...
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211022
DTEND;VALUE=DATE:20211030
DTSTAMP:20260521T094603
CREATED:20200726T234123Z
LAST-MODIFIED:20210914T173753Z
UID:1208-1634860800-1635551999@old.hopeinfocus.org
SUMMARY:Bidding in the Dark
DESCRIPTION:Yes\, we are asking you to tap your inner adventurer and philanthropist and bid on items that you might not have all the details around. We call it\, Bidding in the Dark. \nFor all of the items\, we’ve provided some descriptions\, so you’re not completely in the dark. \nFor some of the items\, there are hints. \nFor a few of the items\, we’ve attempted to simulate what the item might look like to someone who has a rare retinal disease. Being blind doesn’t always mean a complete loss of light perception. It might involve loss of one’s central vision\, blurred vision\, extreme sensitivity to light\, night blindness\, color loss\, a limited field of vision or a number of other challenges based on the retinal disease and severity of the condition. \nOnly a few of us experience the challenges of growing up without sight\, or of going to high school and wondering every day if tomorrow morning will be the day you wake up and can no longer see daylight. \nWith your help\, we can make a difference by raising funds for research to treat blindness and to support our rare retinal disease community. We hope that you will join us in supporting us and enjoy this different approach to an online auction! \nGet Started!\nText BIDDARK21 to 76278 so that when bidding opens Oct. 22 you are all ready to go!\nInterested in Sponsoring?\nEmail Courtney Assad at courtney@sofiaseeshope.org \n  \n  \n  \n 
URL:https://old.hopeinfocus.org/event/bidding-in-the-dark/
LOCATION:CT
CATEGORIES:fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211018T130000
DTEND;TZID=UTC:20211018T140000
DTSTAMP:20260521T094603
CREATED:20210809T141217Z
LAST-MODIFIED:20210809T141302Z
UID:1483-1634562000-1634565600@old.hopeinfocus.org
SUMMARY:Let's Chat About ... CRISPR and gene editing technology
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \n\nMonica Roy is Vice President\, Clinical Development-Ophthalmology for Editas Medicine. She has focused her career on ophthalmic drug development. She has led teams through all phases of clinical development\, regulatory approval\, commercial launch\, and life cycle management. Her experience includes leading the development of ophthalmic gene therapy programs for age related macular degeneration and diabetic retinopathy\, leading the successful approval of Xiidra for dry eye disease\, and most recently leading gene editing programs in inherited retinal disease. \nCurrently Editas is in trials with EDIT-101\, a CRISPR-based experimental medicine under investigation for the treatment of Leber congenital amaurosis 10 (LCA10) (CEP290). \n\n  \n  \n 
URL:https://old.hopeinfocus.org/event/lets-chat-about-crispr-and-gene-editing-technology/
LOCATION:CT
CATEGORIES:Let's Chat About ...
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2021/01/lets_chat_about_web_banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210929T130000
DTEND;TZID=UTC:20210929T140000
DTSTAMP:20260521T094603
CREATED:20210721T172414Z
LAST-MODIFIED:20210721T172414Z
UID:1474-1632920400-1632924000@old.hopeinfocus.org
SUMMARY:Let's Chat About ... the importance of the patient voice in rare disease
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \n\nJill Dolgin\, PharmD\, Head of Patient Advocacy\, Applied Genetic Technologies\nCorporation (AGTC)\n\n\nLet’s Chat About … the importance of the patient voice in rare disease. \n\nDr. Dolgin leads the patient and professional engagement strategy to drive disease awareness and clinical trial recruitment\nefforts for the AGTC pipeline. She is responsible for incorporating the voice of the patient throughout drug development and corporate culture. She has over 20 years of global biopharmaceutical experience in Medical Affairs\, Corporate Communications\, Patient and Professional Advocacy\, and Public Policy. \nHer role within the company is to ensure that the needs of the patients are considered and incorporated into every aspect of drug development. Externally\, Jill works with patient advocacy groups to educate patients and families about the importance of participating in clinical trials\, gene therapy and the importance of “getting your voices heard” to help consumers\, healthcare professionals\, and policy makers understand your challenges in living with your disease. Dr. Dolgin earned a Doctorate in Clinical Pharmacy from the University of the Sciences at Philadelphia and a Bachelor of Science degree in Pharmacy from The Ohio State University.
URL:https://old.hopeinfocus.org/event/lets-chat-about-the-importance-of-the-patient-voice-in-rare-disease/
LOCATION:CT
CATEGORIES:Let's Chat About ...
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2021/01/lets_chat_about_web_banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210616T190000
DTEND;TZID=UTC:20210616T200000
DTSTAMP:20260521T094603
CREATED:20210408T180220Z
LAST-MODIFIED:20210408T180220Z
UID:1430-1623870000-1623873600@old.hopeinfocus.org
SUMMARY:Let’s Chat About … The Importance of Self Advocacy
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease.\n\n\nToday we chat with Tami Morehouse and Jack McCormick about self advocacy in the rare disease community.\n\n\nTami Morehouse made research history when at age 44\, she participated in a clinical trial for gene therapy for LCA2 (RPE65). Ultimately\, Spark Therapeutics developed the drug that was marketed as LUXTURNA® following Federal Drug Administration approval in December 2017. Tami volunteers in Sofia Sees Hope’s Family Connections program\, which connects people within the LCA community to share information and provide support. She is also an SSH Ambassador. Our Ambassadors give encouragement to LCA patients and caregivers\, they attend conferences\, keep up with research\, and share their stories and experiences to help others.\n\n\nJack McCormick of Ontario\, Canada\, graduated from Wilfrid Laurier University in Waterloo\, Ontario\, in 2018. Diagnosed with LCA2 due to a mutation in his RPE65 gene\, Jack is a passionate advocate for inclusion and accessibility on all fronts. He initially tried to hide his blindness but that all ended when he got Jake\, his beloved guide dog. In college he founded Eye To Eye\, a student club whose goal is to illuminate stigma associated with vision impairments. He volunteers with Fighting Blindness Canada\, including working on the 2018 Young Leaders Summit.\n\n\nHe is an organizational development consultant in the healthcare industry\, is board vice chair of CNIB ON/QC and serves on the Metrolinx Accessibility Committee. In 2021\, he launched the Lights with Jack McCormic‪k podcast\, what he describes as “my attempt to unlock the secrets to living a more meaningful and fulfilling life so that together we can find the lights in our life. Thank you for joining me as we connect with business leaders\, personal development experts and inspiring people with stories to tell.”\n\n\nREGISTER
URL:https://old.hopeinfocus.org/event/lets-chat-about-the-importance-of-self-advocacy/
LOCATION:CT
CATEGORIES:Let's Chat About ...
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210521
DTEND;VALUE=DATE:20210601
DTSTAMP:20260521T094603
CREATED:20210506T120040Z
LAST-MODIFIED:20210518T121816Z
UID:1443-1621555200-1622505599@old.hopeinfocus.org
SUMMARY:Scavenger Hunt 2021
DESCRIPTION:Welcome to the Sofia Sees Hope Scavenger Hunt! We launched it last year because of the coronavirus crisis\, when in-person fundraising went dark and we were unable to be with our family and friends in person. It was so fun that we are bringing it back this year\, even as COVID restrictions are being lifted in many places. \nYour (suggested minimum) donation of $100/team to enter will benefit Sofia Sees Hope\, and the education\, outreach and advocacy work we are engaged in. We will also make a donation from the entry contributions to a 501(c)3 nonprofit of the winner’s choosing (up to $250)! This way you can help a charity in your community that is also doing important work. \nThe Scavenger Hunt runs from Friday\, May 21 through Monday\, May 31. On opening day\, you will receive an email with the list of challenges. \nREGISTER YOUR TEAM\nWith special thanks to our corporate supporters!\n                     
URL:https://old.hopeinfocus.org/event/scavenger-hunt-2021/
LOCATION:CT
CATEGORIES:fundraiser
ATTACH;FMTTYPE=image/png:https://old.hopeinfocus.org/wp-content/uploads/2020/04/ssh_fundraiser_post_graphic-2021.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210513T130000
DTEND;TZID=UTC:20210513T140000
DTSTAMP:20260521T094603
CREATED:20210217T174449Z
LAST-MODIFIED:20210217T174449Z
UID:1400-1620910800-1620914400@old.hopeinfocus.org
SUMMARY:Let's Chat About ... My Retina Tracker
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \n\n\nTodd A. Durham\, MS\, PhD\nVice President\, Clinical & Outcomes Research\, Foundation Fighting Blindness\n\n\nLet’s Chat About … My Retina Tracker \nTodd Durham is the Vice President\, Clinical & Outcomes Research at the Foundation Fighting Blindness\, a national non-profit that funds research to treat and cure inherited retinal diseases. In his current role\, Todd is responsible for directing the Foundation’s Clinical Consortium of retinal experts\, developing strategies to enhance product development\, partnering with industry\, and providing technical input on partnered programs and investment decisions.  Todd has over 25 years of drug development experience. Prior to his current position\, he contributed to research on numerous marketed products as Director of Biostatistics with IQVIA’s Real World Evidence Solutions\, was a doctoral fellow with Bristol Myers Squibb\, and worked in various statistical and leadership roles for Novan\, Inspire Pharmaceuticals\, Quintiles\, and as a self-employed consultant.  Todd earned a BSPH and MS in biostatistics and a PhD in health policy and management (Decision Science and Outcomes Research) from the UNC Gillings School of Global Public Health.
URL:https://old.hopeinfocus.org/event/lets-chat-about-my-retina-tracker/
LOCATION:CT
CATEGORIES:Let's Chat About ...
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2021/01/lets_chat_about_web_banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210419T130000
DTEND;TZID=UTC:20210419T140000
DTSTAMP:20260521T094603
CREATED:20210125T163640Z
LAST-MODIFIED:20210125T163640Z
UID:1380-1618837200-1618840800@old.hopeinfocus.org
SUMMARY:Let’s Chat About … natural history and patient outcome studies
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \n\nJonathan Stokes\, Director\, Patient-Centered Outcomes Research\, abbvie\n\n\nLet’s Chat About … Why natural history and patient outcome studies are important. \n\nJonathan Stokes \n\n\nJonathan has a devoted interest in understanding and bringing to light the patient voice and perspective\, with more than 16 years of research study design and implementation experience. His experience is primarily in health outcomes research; specifically\, the development and evaluation of clinical outcomes of assessment (COAs) for use in clinical trials intended to substantiate product labeling goals\, as well as use of COAs in real world clinical practice. Areas of focus include the evaluation of cardinal signs and symptoms of disease\, health-related quality of life\, improvements and activation in treatment adherence\, understanding unmet need\, and exploring the burden of disease. \nREGISTER
URL:https://old.hopeinfocus.org/event/lets-chat-about-natural-history-and-patient-outcome-studies/
LOCATION:CT
CATEGORIES:Let's Chat About ...
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2021/01/lets_chat_about_web_banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210317T190000
DTEND;TZID=UTC:20210317T200000
DTSTAMP:20260521T094603
CREATED:20210227T193638Z
LAST-MODIFIED:20210317T134716Z
UID:1409-1616007600-1616011200@old.hopeinfocus.org
SUMMARY:A Toast to Treatments: St. Patrick's Day Edition
DESCRIPTION:Put on your green and join us for a unique blend of history and mixology\, with James Beard Award Winner Mixologist Dale DeGroff\, (AKA the King of Cocktails)! \nFire up the Zoom and enjoy a live presentation that includes a history of the Irish Coffee\, along with tips\, tricks and the stories behind these Irish-themed cocktails for your St. Patrick’s Day celebration: a Strange Brew (for the beer lovers)\, an Irish Blond\, a Dubliner\, and of course\, the perfect Irish Coffee. Upon registration\, we’ll email the recipes to you\, so you can be prepared to mix along if you like. \nBefore the event\, you will receive a Zoom webinar link to join the live event on Wednesday\, March 17 at 7pm Eastern / 4pm Pacific (USA/Canada). \nBUY TICKETS\nSponsorship opportunities are available\, and make it possible for your entire team to celebrate on St. Patty’s Day! See the ticket purchase page for options or contact us at info@sofiaseeshope.org. \nWe encourage you to tell others about this event\, as proceeds benefit Sofia Sees Hope. Your contributions make it possible for us to continue the work of our mission – funding research to treat blindness\, supporting free genetic testing\, providing counseling for individuals with inherited retinal diseases (IRDs)\, and continuing our outreach programs for the Leber congenital amaurosis (LCA) community. \nWhile registering for this exciting event\, don’t forget to reserve an autographed copy of Dale’s newest book\, The New Craft of the Cocktail! For an additional $100 contribution to Sofia Sees Hope\, you will receive your autographed copy of Dale’s book by mail soon after its release. Proceeds from book sales will be used to support the My Retina Tracker Program which provides free genetic testing and counseling for the IRD community. 70% of this contribution is tax deductible. \nTICKETS\n$50.00 (+$3.55 Fee): Your event ticket includes one Zoom login. \n$125.00 (+$7.34 Fee): Event Registration + Autographed Book\nIncludes an autographed copy of Dale’s book\, The New Craft of the Cocktail\, and a discounted Zoom registration link at $25. \n$500.00: Patron Sponsorship\nSupport us as a Patron! Your generosity helps to offset event expenses and increases our fundraising for research to treat blindness. Patrons will be able to receive up to 5 registration links to share with friends\, and your generosity will be recognized on our website and during the event (unless you don’t want us to!). \n$1\,000.00: Corporate Sponsorship\nTreat your team! s a sponsor\, you will receive access for us to 25 team members (25 separate registration links)\, and your brand will be recognized during our presentation\, on our website\, and in social media\, and in email promotions leading up to and following the event. Need more? Contact us to set up a custom sponsorship for your team: info@sofiaseshope.org or 860-556-3119. \nBUY TICKETS\nSponsors
URL:https://old.hopeinfocus.org/event/a-toast-to-treatments-st-patricks-day-edition/
LOCATION:CT
CATEGORIES:fundraiser
ATTACH;FMTTYPE=image/png:https://old.hopeinfocus.org/wp-content/uploads/2021/02/toast_web_banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210315T130000
DTEND;TZID=America/New_York:20210315T140000
DTSTAMP:20260521T094603
CREATED:20210122T185153Z
LAST-MODIFIED:20210122T185153Z
UID:1374-1615813200-1615816800@old.hopeinfocus.org
SUMMARY:Let's Chat About ... Genetic Testing
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \n\nEmily Place\, Licensed Genetic Counselor and Research Study Coordinator\, Massachusetts Eye and Ear\n\n\nLet’s Chat About … genetic testing. \n\nEmily Place \n\n\nPrior to working at the Ocular Genomics Institute at Mass Eye and Ear\, Place worked as a pediatric genetic counselor at The Children’s Hospital of Philadelphia. She joined the OGI in 2011\, where she provides risk assessment and genetic counseling services to families with inherited retinal dystrophies. She also serves as the study coordinator for the research study of molecular genetics of inherited retinal dystrophies. \nREGISTER
URL:https://old.hopeinfocus.org/event/lets-chat-about-genetic-testing/
LOCATION:CT
CATEGORIES:Let's Chat About ...
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210219T120000
DTEND;TZID=UTC:20210219T130000
DTSTAMP:20260521T094603
CREATED:20210204T151119Z
LAST-MODIFIED:20210217T140048Z
UID:1394-1613736000-1613739600@old.hopeinfocus.org
SUMMARY:LCA Research Update: CRB1-associated retinal disease
DESCRIPTION:We invite you to attend the research update for CRB1-associated retinal disease (also known as LCA 8). Speakers are Amy Laster\, Phd\, Foundation Fighting Blindness; Todd Durham\, PhD\, Foundation Fighting Blindness\, and Laura Manfre\, co-founder and president of Sofia Sees Hope. \nOur speakers will\n1) share an overview of the Scientific Advancement Workshop that took place previously\,\n2) provide a summary of the latest research\, and\n3) answer your questions! \nFor any questions about this event\, please send an email to info@sofiaseehope.org. \nWe look forward to seeing you! \nClick the link below to register.
URL:https://old.hopeinfocus.org/event/1394/
LOCATION:CT
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210218T120000
DTEND;TZID=UTC:20210218T130000
DTSTAMP:20260521T094603
CREATED:20210204T150939Z
LAST-MODIFIED:20210204T150939Z
UID:1392-1613649600-1613653200@old.hopeinfocus.org
SUMMARY:LCA Research Update: IQCB1/NPHP5-associated retinal dystrophy
DESCRIPTION:We invite you to attend the research update for IQCB1/NPHP5-associated retinal disease (also known LCA 17). Speakers are Amy Laster\, Phd\, Foundation Fighting Blindness; Todd Durham\, PhD\, Foundation Fighting Blindness\, and Laura Manfre\, co-founder and president of Sofia Sees Hope. \nOur speakers will\n1) share an overview of the Scientific Advancement Workshop that took place previously\,\n2) provide a summary of the latest research\, and\n3) answer your questions! \nFor any questions about this event\, please send an email to info@sofiaseehope.org. \nWe look forward to seeing you!
URL:https://old.hopeinfocus.org/event/lca-research-update-iqcb1-nphp5-associated-retinal-dystrophy/
LOCATION:CT
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210216T150000
DTEND;TZID=America/New_York:20210216T160000
DTSTAMP:20260521T094603
CREATED:20210122T184235Z
LAST-MODIFIED:20210216T181255Z
UID:1372-1613487600-1613491200@old.hopeinfocus.org
SUMMARY:Let's Chat About: FDA Review of Rare Retinal Disease Treatments
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \n\nWiley Chambers\, MD\, Supervisory Medical Officer\, Office of New Drugs\, Center for Drug Evaluation and Research\, U.S. Food and Drug Administration (FDA)\n\n\nLet’s Chat About … What it takes to receive approval for retinal disease treatments from the FDA. \n\nWiley Chambers \n\n\nDr. Chambers joined the FDA in 1987\, as a primary reviewer for ophthalmic drug products and in 1990 became a Supervisory Medical Officer for Ophthalmologic Drug Products. In this capacity\, Dr. Chambers has supervisory responsibility for the clinical review of ophthalmologic drug products and ophthalmic therapeutic biologic products submitted to the Center for Drug Evaluation and Research.  He is currently a Clinical Professor of Ophthalmology and Adjunct Assistant Professor of Computer Medicine at The George Washington University. \nREGISTER
URL:https://old.hopeinfocus.org/event/fda-review-of-rare-retinal-disease-treatments/
LOCATION:CT
CATEGORIES:Let's Chat About ...
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210208T160000
DTEND;TZID=UTC:20210208T170000
DTSTAMP:20260521T094603
CREATED:20210104T171623Z
LAST-MODIFIED:20210204T152909Z
UID:1351-1612800000-1612803600@old.hopeinfocus.org
SUMMARY:Sofia Sees Hope Book Club: Read "Lila and Hadley"
DESCRIPTION:Welcome to the inaugural Sofia Sees Hope Book Club! This club is especially made for middle school-age kids who are visually impaired. It will be moderated by Sofia Priebe\, a high school senior in Connecticut who has vision loss due to Leber congenital amaurosis (LCA). \nThe Book Club will meet weekly on Zoom beginning Monday\, January 18\, and last for four weeks. Each hour-long meeting will begin at 4 p.m.\, EST. Upon registration\, you will receive a link to join the Zoom. \nOur first book is called “Lila and Hadley\,” written by New York Times bestselling author Kody Keplinger. Kody also has LCA\, and each of her books features a character who has vision loss. “Lila and Hadley” is recommended for ages 9-12. \nThe Club schedule is: \n\nJan. 18\, 4 p.m. – chapters 1-5\nJan. 25\, 4 p.m. – chapters 6-11\nFeb. 1\, 4 p.m. – chapters 12-18\nFeb. 8\, 4 p.m. – chapters 19-24\n\nRegistration is capped at 15\, and registration will close January 11. The book is available on Bookshare (free)\, Audible\, Amazon\, your local independent bookstore (ask them to order it for you if they don’t have it in stock)\, or your public library. If you need help accessing the book\, please send an email to Beth@sofiaseshope.org. You will also need a Zoom account (they’re free). We’re happy to help! \nThis event is made possible with the support of Spark Therapeutics\, Janssen Pharmaceutical Companies of Johnson & Johnson\, Meira GTx\, Dominion Energy\, ProQR\, and AGTC.\nWhat’s the book about?\nHadley\, 12\, legally blind\, angry\, and not a lover of dogs unexpectedly bonds with Lila\, a depressed pit bull waif. \nHadley feels as if she’s lost everything\, and now she’s losing her sight. With her mom in prison\, she must move to Kentucky to live with her estranged older sister\, Beth\, last seen when Hadley was 7. Accompanying Beth\, a dog trainer\, to Right Choice Rescue and wandering among the penned trainees\, Hadley spots Lila\, considered unadoptable\, looking equally miserable. Observing them connect\, Vanessa\, the owner\, talks Beth into taking Lila home for Hadley to train. Still furious with Beth and their mom\, whose letters and phone calls she ignores\, Hadley works with Lila and grudgingly allows Beth to guide the training. Her vision worsening (she has retinitis pigmentosa)\, Hadley eventually agrees to mobility classes. Learning to use a cane is challenging\, especially while holding Lila’s leash in one hand. Her persistence—Hadley’s strong suit—is a plus. \nThis event is made possible with the support of Spark Therapeutics\, Janssen Pharmaceutical Companies of Johnson & Johnson\, Meira GTx\, ProQR\, and AGTC.\nWatch the trailer for “Lila and Hadley:”\n\n\n 
URL:https://old.hopeinfocus.org/event/sofia-sees-hope-book-club-read-lila-and-hadley/
LOCATION:CT
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210127T130000
DTEND;TZID=UTC:20210127T140000
DTSTAMP:20260521T094603
CREATED:20210119T190952Z
LAST-MODIFIED:20210119T192501Z
UID:1366-1611752400-1611756000@old.hopeinfocus.org
SUMMARY:Webinar: Let's Chat About ... the Latest in LCA Therapy Research
DESCRIPTION:Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind\, but we invite all members of our community\, including those in research\, industry\, and the regulatory communities to join any of the sessions\, as we look ahead to a common goal of advancing treatments for rare retinal disease. \n\nBen Shaberman\, Senior Director\, Scientific Outreach & Community Engagement\, Foundation Fighting Blindness\n\n\nLet’s Chat About … What’s in the therapy pipeline for Leber congenital amaurosis. \nBen Shaberman \nFor 16 years\, Ben has been reporting on retinal research for all of FFB’s electronic and print publications. In addition\, he presents the latest scientific advancements at local and national events for patients and families\, and conducts various training activities for staff and constituents. He enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them. Ben also leads the company’s outreach to eye care professionals throughout the United States. \nREGISTER
URL:https://old.hopeinfocus.org/event/webinar-lets-chat-about-the-latest-in-lca-therapy-research/
LOCATION:CT
CATEGORIES:Let's Chat About ...
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2021/01/lets_chat_about_web_banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200822T190000
DTEND;TZID=UTC:20200822T203000
DTSTAMP:20260521T094603
CREATED:20200701T151608Z
LAST-MODIFIED:20200828T160408Z
UID:1176-1598122800-1598128200@old.hopeinfocus.org
SUMMARY:A Toast To Treatments: A Fundraiser to Benefit LCA and Rare IRD Treatments & Community
DESCRIPTION:REGISTER NOW\nA unique blend of history and mixology\, with two-time James Beard Award-winner and Master Mixologist Dale DeGroff\, (aka King of Cocktails). Invite a few friends\, fire up the Zoom\, and join Dale and Erik Andersson\, Eastern Region Ambassador for Hendrick’s Gin\, for “The Evolution of the Martini: From 1888 to the New Millennium.” \nJames Beard Award Winner\, Mixologist Dale DeGroff developed his techniques tending bar\, most notably at New York’s famous Rainbow Room\, where he pioneered a gourmet approach to recreating the great classic cocktails. DeGroff has since been credited with reinventing the bartending profession and setting off a cocktail revival. Author of The Essential Cocktail and The Craft of the Cocktail (Random House)\, Dale’s influence in the bar world has spanned three decades. He is a partner in the award-winning bar training program\, Beverage Alcohol Resource (BAR) and founding president of the Museum of the American Cocktail. \nYou’re welcome to mix one or more martinis along with Dale and Erik\, or sit back and sip your beverage of choice while enjoying this mixology event\, and supporting our organization. \nIncrease your support and be the first to receive a signed copy of Dale’s new book\, The New Craft of the Cocktail: Everything You Need to Know to Think Like a Master Mixologist\, with 500 recipes. Your autographed book will be shipped to you directly upon its release on September 22\, 2020 and 100% of the proceeds of this sale will be used to advance research and support free genetic testing and counseling. $70 of this contribution is tax deductible. \n  \nBuy the Book\n  \n\n\n\nREGISTER NOW\nThis event is virtual. After registering\, you will receive Zoom registration information\, and an ingredients list. Choose which of the three martinis you would like to try and purchase the ingredients ahead of time to mix right along with our presenters. \nThank you to our sponsors!
URL:https://old.hopeinfocus.org/event/a-toast-to-treatments/
LOCATION:CT
CATEGORIES:fundraiser
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2020/07/dale-degroff-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200618
DTEND;VALUE=DATE:20200621
DTSTAMP:20260521T094603
CREATED:20200220T193954Z
LAST-MODIFIED:20200220T194157Z
UID:1090-1592438400-1592697599@old.hopeinfocus.org
SUMMARY:Visions 2020
DESCRIPTION:Join Sofia Sees Hope at VISIONS 2020\, the national conference of the Foundation Fighting Blindness\, a one-of-a-kind event in which individuals who are visually impaired\, and their families\, have the opportunity to hear about exciting advancements in blindness research. All attendees can gain practical skills for thriving with vision loss\, learn about products and services that can improve their lives\, and connect with others from across the country. \nThe program is designed specifically for individuals and families who are affected by blinding retinal diseases such as age-related macular degeneration\, retinitis pigmentosa\, Usher syndrome\, and related conditions. These diseases cause progressive blindness and affect more than 10 million Americans and millions more around the world.
URL:https://old.hopeinfocus.org/event/visions-2020/
LOCATION:Hyatt Regency Minneapolis\, 1300 Nicollet Mall\, Minneapolis\, MN\, 55403\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200426T140000
DTEND;TZID=UTC:20200426T160000
DTSTAMP:20260521T094603
CREATED:20200304T155612Z
LAST-MODIFIED:20200316T153403Z
UID:1106-1587909600-1587916800@old.hopeinfocus.org
SUMMARY:CANCELED: A Rare Opportunity: New York Times Bestselling Author Kody Keplinger
DESCRIPTION:WE HOPE TO RESCHEDULE IN THE FALL. \nSofia Sees Hope presents “A Rare Opportunity: Kody Keplinger\,” New York Times bestselling author who lives with Leber congenital amaurosis. \n \nKody Keplinger was born and raised in small town western Kentucky\, where she began her writing career after penning The New York Times bestseller\, The DUFF\, at age 17. Kody has Leber congenital amaurosis (LCA)\, a rare inherited retinal disease (IRD) that causes low vision or blindness\, typically from birth. Join us as Kody reads from her new book\, talks about her writing process and her life as a “confident and proud disabled woman\,” and signs copies of her book. \nShe is the author of nine novels\, including her newest\, LILA AND HADLEY\, about a teenage girl who is losing her vision due to retinitis pigmentosa\, another IRD. \n“A former Kentuckian and legally blind\, Keplinger knows this territory\, literal and figurative\, inside out. A funny\, moving tale\, at once unsparingly realistic and upbeat.” ~ Kirkus Reviews\n \nCome meet Guiding Eyes for the Blind of Southeastern CT guide dogs and local puppy raisers!\n  \n\nSponsors
URL:https://old.hopeinfocus.org/event/a-rare-opportunity-new-york-times-bestselling-author-kody-keplinger/
LOCATION:La Grua Center\, 32 Water Street\, Stonington\, CT\, United States
CATEGORIES:fundraiser
ATTACH;FMTTYPE=image/jpeg:https://old.hopeinfocus.org/wp-content/uploads/2020/03/kody_eventbrite_cover-copy.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200228T080000
DTEND;TZID=UTC:20200228T103000
DTSTAMP:20260521T094603
CREATED:20200221T160046Z
LAST-MODIFIED:20200221T160046Z
UID:1097-1582876800-1582885800@old.hopeinfocus.org
SUMMARY:NORD Connecticut Rare Action Network Rare Disease Day 2020
DESCRIPTION:Please join patients\, families\, caregivers\, medical professionals\, industry representatives and state legislators at this important event on Rare Disease Day to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Connecticut.
URL:https://old.hopeinfocus.org/event/nord-connecticut-rare-action-network-rare-disease-day-2020/
LOCATION:Connecticut State Legislative Office Building\, 300 Capitol Avenue\, Hartford\, CT\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190726
DTEND;VALUE=DATE:20190729
DTSTAMP:20260521T094603
CREATED:20180703T123535Z
LAST-MODIFIED:20190523T151648Z
UID:487-1564099200-1564358399@old.hopeinfocus.org
SUMMARY:LCA Family Conference 2019
DESCRIPTION:Join Sofia Sees Hope for its 2nd LCA Family Conference in Philadelphia. In multiple sessions\, hear the latest in research\, treatments\, education\, and advocacy in the Leber congenital amaurosis and inherited rare disease communities. \nFamilies living with LCA or IRDs connect in a convivial atmosphere of shared stories and mutual support. \n[mk_button dimension=”flat” size=”large” url=”https://www.eiseverywhere.com/sofiaseeshope2019″ align=”center” fullwidth=”true” bg_color=”#77be43″ btn_hover_bg=”#68a83a” btn_hover_txt_color=”#ffffff”]2019 CONFERENCE INFORMATION[/mk_button]\n 
URL:https://old.hopeinfocus.org/event/lca-family-conference/
LOCATION:Warwick Rittenhouse Square\, 220 S 17TH ST\, PHILADELPHIA\, PA\, 19103\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190703T193000
DTEND;TZID=UTC:20190703T223000
DTSTAMP:20260521T094603
CREATED:20190504T143826Z
LAST-MODIFIED:20190506T152044Z
UID:721-1562182200-1562193000@old.hopeinfocus.org
SUMMARY:New Kids On The Block: The Mixtape Tour
DESCRIPTION:NKOTB Mixtape Tour at Mohegan Sun Arena Skybox\nWednesday\, July 3\, 2019\n7:00 p.m.\nBuy Your Tickets!\nNew Kids On The Block launched their biggest tour in years in May\, and Sofia Sees Hope has scored a skybox at Mohegan Sun Arena! \nJoin us as we travel down Memory Lane on THE MIXTAPE TOUR with NKOTB and VERY special guestsSalt N Pepa\, Tiffany\, Debbie Gibson and Naughty by Nature. \nWOW… can you believe that??? \nEnjoy the concert in style with exclusive viewing access from a private skybox suite overlooking the stage. Experience the energy of the concert and feel like a VIP\, all while supporting Sofia Sees Hope and our mission to drive awareness\, support the rare inherited retinal disease community and fund research for cures and treatments for blindness. \nSKYBOX AMENITIES INCLUDE: \n\nPrivate entrance\nPrivate suite level restrooms\nSpacious seating and accommodations\nLight snacks & cash bar\nBasket raffle\n\nBuy Your Tickets!
URL:https://old.hopeinfocus.org/event/new-kids-on-the-block-the-mixtape-tour/
LOCATION:Mohegan Sun\, 1 Mohegan Sun Blvd\, Uncasville\, CT\, 06382\, United States
CATEGORIES:fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190330T180000
DTEND;TZID=UTC:20190330T203000
DTSTAMP:20260521T094603
CREATED:20190212T214918Z
LAST-MODIFIED:20190308T152545Z
UID:667-1553968800-1553977800@old.hopeinfocus.org
SUMMARY:A Rare Opportunity
DESCRIPTION:BUY TICKETS\n  \nPlease join us for an evening to raise awareness of rare inherited retinal disease. Join us to learn about vision lost and vision gained and issues facing those with rare disease. \nFeaturing: \n\nNicole Kear\, bestselling author of the memoir “Now I See You\,” about her diagnosis with retinitis pigmentosa.\nChristian Guardino\, Howie Mandel’s 2017 Golden Buzzer winner on America’s Got Talent\, diagnosed with Leber congenital amaurosis\, who received gene therapy to reverse vision loss.\nSofia Priebe\, sophomore at Ledyard High School who dances and rows\, diagnosed with Leber congenital amaurosis.\nDiana Owen\, Head of School at Pine Point in Stonington. She was diagnosed in her 40s with a macular hole\, a condition that results in change and loss of vision over time.\nHosted by Dr. Amy Bass\, author\, professor and lecturer\n\nTickets\n\n$100 per person\nAdd an autographed copy of “Now I See You” +$25\nAdd an exclusive “Rare Tasting” ticket and enjoy a tasting of four champagnes\, including the aptly named Rare Genisis\, Piper-Heidsieck. Courtesy of Mike Mondello and Mystic Financial Group; +$150 (only 16 available)\n\nJoin us for cocktails and appetizers before the presentation\, and dinner after the presentation. \nDoors open at 6 p.m.\, presentation and panel from 6:30-7:45 p.m. Cocktail attire. \nThank you to our generous sponsors and patrons for supporting this event. All proceeds will benefit Sofia Sees Hope’s programs to support research and patient access to genetic testing. \nPresented by:\nDominion Energy\nEditas Medicine\nBank Square Books\nSimply Majestic\nMystic Financial Group \nWe would also like to thank the following corporate supporters of Sofia Sees Hope:\nMeira GTx\nSanofi Genzyme\nSpark Therapeutics \n  \nBUY TICKETS\n\nAbout the panelists\nAt the age of 19\, Nicole Kear’s biggest concern is choosing a major in college — until she gets a life-changing diagnosis of retinitis pigmentosa. She has only a decade or so before she is blind. Kear decides to make the most of the vision she has left. She joins circus school\, tears through boyfriends\, travels the world\, and through all these hi-jinks\, she keeps her vision loss a secret. Told with humor and irreverence\, “Now I See You” is an uplifting story about refusing to cower at life’s curveballs\, about the power of love to triumph over fear. But\, at its core\, it’s a story about acceptance: facing the truths that just won’t go away\, and facing yourself\, broken parts and all. Kear will give a talk on the experiences that led to her memoir. \n  \nIn 2017\, then 17-year-old Long Island resident Christian Guardino stepped onto the America’s Got Talent audition stage\, and blew away the judges with his rendition of the Jackson 5’s “Who’s Lovin’ You.” Guardino had undergone experimental eye surgery five years ago as part of a clinical trial for a revolutionary genetic treatment for Leber congenital amaurosis with the RPE65 genetic mutation. Before surgery\, Christian had difficulty seeing even in very bright light\, having slowly lost vision since toddlerhood. \n  \nSofia Priebe is the inspiration for the founding of Sofia Sees Hope. She is a sophomore at Ledyard High School who has LCA and has progressively lost vision since early childhood. Sofia has not let that stop her\, as she pursues her academic career\, dances\, and rows crew. \n  \nDiana Owen is Head of School at Pine Point in Stonington. She was diagnosed in her 40s with a macular hole\, a condition that results in change and loss of vision over time. \n  \n  \nPanel moderator is bestselling author Dr. Amy Bass\, whose 2018 book “One Goal” was named one of the best nonfiction sports books of 2018 by The Boston Globe. \n  \n  \nBUY TICKETS
URL:https://old.hopeinfocus.org/event/a-rare-opportunity/
LOCATION:Lake of Isles\, 1 Clubhouse Dr\, North Stonington\, CT\, 06359\, United States
CATEGORIES:fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20181209T190000
DTEND;TZID=UTC:20181209T220000
DTSTAMP:20260521T094603
CREATED:20171020T114542Z
LAST-MODIFIED:20181107T140941Z
UID:262-1544382000-1544392800@old.hopeinfocus.org
SUMMARY:A Pentatonix Christmas Tour
DESCRIPTION:A Pentatonix Christmas Tour at Mohegan Sun Arena Skybox\nSunday\, December 9\, 2018\n7:00 p.m.\nEnjoy the concert in style with exclusive viewing access from a private skybox suite overlooking the stage.  Experience the energy of the concert and feel like a VIP\, all while supporting Sofia Sees Hope and our mission to drive awareness\, support the rare inherited retinal disease community and fund research for cures and treatments for blindness. \nSKYBOX AMENITIES INCLUDE: \n\nPrivate entrance\nPrivate suite level restrooms\nSpacious seating and accommodations\nLight snacks & cash bar\nBasket raffle to support our fundraising efforts
URL:https://old.hopeinfocus.org/event/pentatonix-christmas-tour/
LOCATION:Mohegan Sun\, 1 Mohegan Sun Blvd\, Uncasville\, CT\, 06382\, United States
CATEGORIES:fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180621
DTEND;VALUE=DATE:20180624
DTSTAMP:20260521T094603
CREATED:20180522T125452Z
LAST-MODIFIED:20180522T125452Z
UID:467-1529539200-1529798399@old.hopeinfocus.org
SUMMARY:VISIONS 2018 National Conference
DESCRIPTION:VISIONS\, the national conference of the Foundation Fighting Blindness\, is the only event of its kind—created solely for individuals and families who are affected by retinal diseases. Find access to information on the latest retinal research and clinical trials\, the doctors performing the work\, and other families from around the country living with the same diseases. \nJune 21–23 • San Diego\, CA\nwww.blindness.org/visions
URL:https://old.hopeinfocus.org/event/visions-2018-national-conference/
LOCATION:CT
END:VEVENT
END:VCALENDAR