{"id":8730,"date":"2026-01-15T00:11:01","date_gmt":"2026-01-15T00:11:01","guid":{"rendered":"https:\/\/prrf.org\/?p=8730"},"modified":"2026-02-09T16:47:35","modified_gmt":"2026-02-09T16:47:35","slug":"hope-for-vision-walk-story-2026","status":"publish","type":"post","link":"https:\/\/prrf.org\/ja\/hope-for-vision-walk-story-2026\/","title":{"rendered":"How One Michigan Family Built Connections And Inspired Global Support For Retinal Research"},"content":{"rendered":"
\"A

Team Aria at the 2025 Hope for Vision Fundraising Walk<\/em><\/p><\/div>\n

Lisa LoVasco\u2019s daughter Aria was just three months old when she was diagnosed with Familial Exudative Vitreoretinopathy (FEVR), a rare retinal disease that can lead to vision loss. The diagnosis immediately sparked Lisa\u2019s desire to find and support that could help her daughter, and other families navigating similar uncertainty.\u00a0<\/span><\/p>\n

\u201cYou feel out of control, as a parent,\u201d Lisa said. \u201cThere is so little you feel like you can do to help.\u201d\u00a0<\/span><\/p>\n

Showing up for doctors appointments didn\u2019t feel like enough, leading Lisa to search out the Pediatric Retinal Research Foundation (PRRF), an organization supported by and led in part by some of Aria\u2019s doctors.<\/span><\/p>\n

\u201cIt\u2019s a phenomenal group of doctors who all care very much and are really world-renowned,\u201d Lisa shared. \u201cThe PRRF community consists of very special people who care very much about the work they\u2019re doing.\u201d Through the PRRF, Lisa became involved in fundraising for new treatments, research initiatives, and community connection programs for families affected by pediatric retinal diseases.<\/span><\/p>\n

For Aria, connection mattered just as much as research. \u201cShe used to ask me, \u2018Can you make me a playdate with another kid who has eyes like me?\u201d Lisa recalled. After trying to connect with online groups, The LoVasco family finally met another family through PRRF. At the Foundation\u2019s annual Family Connection Conference, they met their Mia, another young girl living with FEVR.\u00a0<\/span><\/p>\n

Upon meeting Mia, Aria said, \u201cI feel like a dream is coming true,\u201d shared Lisa. The two became instant friends and despite living across the country, the families stayed connected, attending PRRF events such as the <\/span>Hope for Vision Walk<\/span><\/a>, which has become a cherished tradition for both families.\u00a0<\/span><\/p>\n

\"Two

Friends Mia and Aria pose, making a heart shape with their hands pressed together, with Dr. Capone at the 2025 Hope for Vision Walk.<\/p><\/div>\n

For Lisa, gathering a large group each year for the Walk was important to show Aria she\u2019s supported. \u201cI wanted Aria to feel loved and supported through all of this. She gets asked a lot about her eyes, but I never want it to be something she\u2019s ashamed of.\u201d<\/span><\/p>\n

For Aria, the Walk felt like a party. The family wore beads, they ate good food, invited friends, and even spray painted their hair blue. \u201cIt\u2019s where we celebrate the kids with eye disease,\u201d Aria said. Her favorite part? Feeling supported and loved.\u00a0<\/span><\/p>\n

\u201c<\/i>The Hope for Vision Walk embodies everything our Foundation stands for\u2014community, hope, and action,\u201d said PRRF President Antonio Capone, Jr., M.D.. \u201cFamilies impacted by pediatric retinal diseases walk alongside researchers, medical professionals, and community supporters who are all united by a shared mission – to change the future.\u00a0 Every participant helps us advance critical research while building the supportive community that these families desperately need.\u201d<\/p>\n

The 2025 Hope for Vision Campaign raised $52,375, with supporters and families participating both in person and virtually. The momentum carried into <\/span>PRRF\u2019s Year-End Fundraiser for Rare Disease Research<\/span><\/a>, offering supporters a meaningful way to close out the year\u2014and begin a new one\u2014by investing in hope, progress, and care for children with rare retinal conditions.<\/span><\/p>\n

PRRF Board Member Chuck Walls, whose son Collin lives with X-Linked Retinoschisis, reflected on the impact of the campaign. \u201cWe were incredibly excited to participate in the 2025 Hope for Vision Campaign, which truly became a global event,\u201d Walls said. \u201cFriends and extended family walked, ran, and biked in support\u2014from Virginia and North Carolina to communities across the country and around the world, including Europe and the Far East. The Hope for Vision Campaign brought us together wherever we were, all for such an important cause.\u201d<\/p>\n

For Lisa, involvement with PRRF offered something invaluable during an otherwise overwhelming journey. \u201cYou are not alone in this,\u201d she shared with parents newly supporting a child with a rare retinal disease. \u201cIt\u2019s a big figuring out process, a shock to the system. But, there is hope.\u201d\u00a0<\/span><\/p>\n

\u201cBeing involved with PRRF has truly been part of the healing process for me. With so many things out of your hands, here is something tangible to help in some way: support research, make connections, get information out to other people, and help my daughter.\u201d<\/span><\/p>\n

This year, the <\/span>2026 Hope For Vision Walk<\/span><\/a> will take place on Sunday, April 19, 2026, the same weekend as the PRRF Family Connection Conference. The events are open to both in-person and virtual participation around the world. Learn more and register here: <\/span>https:\/\/prrf.org\/upcoming-events\/united-in-hope\/<\/span><\/a>.\u00a0<\/span><\/p>\n

\"Rare<\/span><\/i><\/p>","protected":false},"excerpt":{"rendered":"

Every step brought hope for children living with rare retinal diseases: How the Hope for Vision walk changed the life of one family, and how they went on to lead a triumphant year in 2025.<\/p>","protected":false},"author":22,"featured_media":8734,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","om_disable_all_campaigns":false,"footnotes":""},"categories":[43,36,44,46],"tags":[],"class_list":{"0":"post-8730","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-articles","8":"category-blog","9":"category-news","10":"category-parent-stories"},"_links":{"self":[{"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/posts\/8730","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/users\/22"}],"replies":[{"embeddable":true,"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/comments?post=8730"}],"version-history":[{"count":4,"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/posts\/8730\/revisions"}],"predecessor-version":[{"id":8771,"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/posts\/8730\/revisions\/8771"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/media\/8734"}],"wp:attachment":[{"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/media?parent=8730"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/categories?post=8730"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/prrf.org\/ja\/wp-json\/wp\/v2\/tags?post=8730"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}