Mission -Vision - Values
Mission: Strongest Hearts mission is simple, we look to raise funds to provide funding for research to find a cure for muscular dystrophy as we work to provide education to families and the medical community, improve early identification and aid with those suffering from the rarest and most serious forms of Muscular Dystrophy (MD).
Vison: Today there is no cure for MD. Our vision is to live in a world where MD can be identified at birth or in utero and treated with a single treatment that permanently stops the disease.
Values: Healthcare is generally difficult to navigate, but for families affected by rare diseases it can be a nightmare with treatments promising miracle cures or giving false hope. Strongest Hearts is dedicated to finding a cure in an ethical manner, by working only with vetted and accomplished researchers and physicians and with full transparency. This means that 93% of all funds raised go directly towards the research. Strongest Hearts is partnering with industry leading, doctors, attorneys and other non-profits to ensure that we are marching towards our mission of curing MD. Additionally, the research will be shared with our community so they can see the results of their giving.
-Many Hearts. One Mission
History
In 2021, a 6-year medical odyssey finally ended when our son was diagnosed with BMD. While receiving a diagnosis was a relief, the lack of treatment meant that relief was quickly replaced by fear, anxiety, and hopelessness. Many nights have been spent not sleeping and worrying about the future of our special boy.
That all changed when the family was able to meet with doctors working in CRISPR and that a cure for MD was within reach. The mission became immediately clear: GET THIS DONE NOW.
Over the course of the last 12 months, the family started Strongest Hearts, organized CRISPR testing with Hunterian, created a partnership with PPF and is rapidly moving to discovery and pre-clinical phases of therapeutic development.
MD never stops and we have dedicated ourselves to ensuring that we stop it.
That all changed when the family was able to meet with doctors working in CRISPR and that a cure for MD was within reach. The mission became immediately clear: GET THIS DONE NOW.
Over the course of the last 12 months, the family started Strongest Hearts, organized CRISPR testing with Hunterian, created a partnership with PPF and is rapidly moving to discovery and pre-clinical phases of therapeutic development.
MD never stops and we have dedicated ourselves to ensuring that we stop it.
Our Founders
Ryan and Tania founded Strongest Hearts in 2022, after their only son was diagnosed with Becker's Muscular Dystrophy. Strongest Hearts is on a mission to find a cure for muscular dystrophy while also working to provide education to families and the medical community to improve early identification and aid those suffering from the rarest and most serious forms of muscular dystrophy.
Ryan Barbera-Founder
Ryan Barbera is CEO of Data Canopy, a global technology firm with clients in the healthcare, government, and commercial real estate sectors, among others. Ryan is a recognized thought leader in the IT industry and currently serves on the advisory board of the Howard Tech Council. He is an active member of the Lido Civic Club of Washington, DC, and is involved with the Chiro Clin Foundation which is focused on working with organizations and families to help prevent and cure cancer (a disease that struck close to home for him and his family). In his free time, Ryan enjoys activities with his family as well as playing and watching soccer. |
Tania Barbera-Founder
Tania Barbera is an award-winning educator who has a master’s degree in education from Johns Hopkins University who has worked with children for nearly two decades. She is also a professional photographer and previously worked in some of the most prestigious studios in the Washington DC area. Tania is an avid advocate for children and spent the first 13 years of her career in education working with children with special needs. This passion is now being translated to her foundation where she is working towards helping to eradicate muscular dystrophy.
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Heidi Webb, CFRE- COO
Heidi Webb, CFRE has spent the past 24 years as a front-line fundraiser and strategist for nonprofit organizations. In her spare time, Heidi walks dogs for a local animal rescue, serves as an advisor for The Unfunded List, and in 2005, she authored and signed into law, a teen suicide prevention bill in Maryland. Heidi is passionate about the work of Strongest Hearts and says that it "hits home" for her as a mother. Like everyone involved with Strongest Hearts, Heidi supports this mission and the ability it has to be life-changing. |