Connective Issues Winter 2025

WALKFOR VICTORY

Get out this spring to mix and mingle with others who understand from your community. It’s fun for the whole family. Sign up today as an individual, start a team, or join a team! View all upcoming WFV events at Marfan.org/walk .  FEBRUARY2 : South Florida (Hollywood)  MARCH1 : Houston  MARCH2 : Phoenix  MARCH29 : Southern California (Costa Mesa)  APRIL5 : Nashville  APRIL26 : North Carolina (Raleigh)  APRIL26 : Tampa  MAY3 : Northern California (Palo Alto)  MAY3 : Washington, DC  MAY 17 : Pittsburgh  JUNE 1 : Milwaukee  JUNE7 : New Jersey (Morristown)

 Team River raised nearly $30,000 for theWalk

BUILDING COMMUNITY One Walk at a Time “The day of the walk was magical,” said Foundation Board Member Dawn Reiner whose daughter River has Loeys-Dietz syndrome. “It was a gorgeous day. Everyone had fun and made great connections. It was so welcoming knowing there are others who live close by with similar issues.” With the help of volunteers like Medical Chair Dr. John Doty from Intermountain Health and community members like Dawn and the Hawkins family, Utah’s first Walk for Victory in September 2024 was a huge success. More than 100 attendees came together and bonded over a like cause while surpassing their fundraising goal, raising more than $41,000 to further the Foundation’s mission. Dawn, a long-time LDS advocate, was instrumental in bringing the Walk to Salt Lake City. Her family moved to Utah in 2020 and discovered the medical community had limited knowledge of Marfan syndrome and related conditions. “We found most doctors didn’t know how to help my daughter River,” said Dawn. “My Walk for Victory goal was to create awareness and education with the medical community while bringing individuals and families a ff ected with Marfan, Loeys-Dietz, and VEDs together so they didn’t feel so isolated.” For the Hawkins family, whose daughter Iris was diagnosed with early onset Marfan syndrome at birth in 2021, it was a chance to connect with community members and doctors who were familiar with Marfan syndrome. “The day was really a focus on our daughter Iris and those who are impacted by these syndromes,” said Winston, Iris’s father. “Our other children and extended family were so excited to support the cause. It was amazing to see many individuals come out to walk for those impacted by connective tissue conditions.” “When Iris was born, we thought we could handle this alone, but the Walk for Victory has helped us to be more involved and learn from others on how to be strong with these unique medical situations,” he said. “It’s an amazing Foundation that brings us all together when we need it most.”

The Hawkins family at the Salt Lake City Walk for Victory

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