The announcement formally connects Bcureful and the Tuberous Sclerosis Alliance together after working closely together for over the past 8 years.
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Bcureful and the Tuberous Sclerosis Alliance (TS Alliance) announced plans to formally combine efforts, specifically by establishing the Bcureful Travel Fund at the TS Alliance.
"We are grateful to Bcureful for all its work over the past eight inspiring years on behalf of the tuberous sclerosis complex (TSC) community," said Kari Luther Rosbeck, TS Alliance President & CEO. "They have been extraordinary partners in TSC research, sponsoring International TSC Research Conferences and creating programs to support those impacted by TSC. The TS Alliance is honored to assume responsibility for this critically important program."
The TSC Travel and Lodging Patient Assistance Program was originally created in December 2018 by Bcureful and is administered by the National Organization for Rare Disorders (NORD). This travel assistance program provides patients diagnosed with TSC with financial assistance for travel and lodging related to participation in a clinical trial or furtherance of treatment for the disease.
On December 15, 2019, the program will become known as the Bcureful Travel Fund within the TS Alliance. To help ensure a smooth transfer, Bcureful Chair Diane McSwain has also been named to the TS Alliance Board of Directors and will be completing the term of a member who resigned early due to work commitments. NORD will continue to administer the program in 2020 as well.
"Inspired by TSC warriors like Isabel, Ace, Zoe, Derrick and Mary Ann, Bcureful has been growing in scope since its inception in 2011," shared Diane McSwain, Chair of Bcureful. "In 2018, we decided to primarily focus on helping TSC families with travel costs for diagnosis, treatment, surgery and clinical trials. The idea flourished! We established the Bcureful Travel Fund and have now provided more than $100,000 to TSC families through NORD, which administers the funds for us. We soon realized we would be unable to manage our growth with a volunteer-only organization, so we approached the TS Alliance with the idea of merging our efforts. We are grateful to the TS Alliance for carrying on our vision by assuming the Bcureful Travel Fund. I am honored to join the TS Alliance board to continue the efforts started by Bcureful. Our vision to help the TSC community will continue to future generations."
Anyone in the TSC community needing travel fund assistance can find out more by contacting NORD at (203) 616-4320 or TSCTravel@rarediseases.org.
The Tuberous Sclerosis Alliance is the only US-based nonprofit dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. Founded in 1974, it works to improve quality of life for individuals and families affected by TSC by stimulating and sponsoring research; creating programs, support services and resource information; and developing and implementing public and professional programs designed to heighten awareness of the disease. For more information, visit www.tsalliance.org.
Bcureful was founded in 2011 by Julie Scroggins, whose adult daughter Mary Ann was diagnosed with TSC. Julie currently serves as the Community Programs Manager, West at the TS Alliance and has been a liaison to Bcureful the past two years. Bcureful is dedicated to connecting patients to expert medical care and creating opportunities to advance research toward a cure for tuberous sclerosis complex. For more information visit www.bcureful.org.