Brave teenager Vicki Wood is felled by terrifying seizures whenever she feels sad, angry, scared – or HAPPY. Her legs buckle and she crashes to the ground up to a dozen times a day. And the 18-year-old now tries to be as boring as possible in a desperate bid to...
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CINCINNATI — Shortly after Ryan Dempster and his wife, Jenny, welcomed daughter Riley into the world on April 1, they learned their daughter suffers from DiGeorge syndrome, a rare congenital disease that prevents her from swallowing and digesting food. Dempster has commuted to Childrens Memorial Hospital over the last seven...
Ryan Dempster, a pitcher for the Chicago Cubs, recently opened up to the Chicago Tribune about his new-born daughter and her fight with DiGeorge Syndrome. In the interview, the professional baseball player admitted that the experience has “been rougher than anything I can imagine.” The syndrome is caused by a...
New York, NY – Cure Mito Foundation and Hope for PDCD foundation, both patient-led foundations focused on advancing research and supporting families affected by Leigh syndrome and Pyruvate Dehydrogenase Complex Deficiency (PDCD), respectively, are excited to announce a launch of a PDCD patient registry. This innovative registry will be led...
NEWPORT BEACH, Calif., March 18, 2021 — CureDuchenne, a leading global nonprofit focused on finding and funding a cure for Duchenne muscular dystrophy, announces a webinar to continue educating the Duchenne community about the COVID-19 vaccines. Part of their COVID-19 education initiative which launched in January, this webinar will focus...
LOS ANGELES, CA – CureSHANK will award a total of $250,000 aimed at stimulating research on SHANK3-related epilepsy, prevalent in Phelan-McDermid syndrome patients. The grants, CureSHANK Research to Cure Grant: Epilepsy (R2C Epilepsy), will provide targeted funding to support SHANK3-related epilepsy research projects. The awards aim to improve mechanistic and...
On Tuesday, students at Cottonwood Elementary School (CWE) recognized Rare Disease Day, a day is hosted on the last day of February. The day aims to raise awareness for rare diseases and improve access to treatment and medical representation for individuals that have rare diseases. Cottonwood’s Mrs. Sitterud visited each...
GAINESVILLE, Fla. – Cyclo Therapeutics, Inc. (Nasdaq: CYTH) (“Cyclo Therapeutics” or the “Company”), a clinical stage biotechnology company dedicated to developing life-changing medicines through science and innovation for patients and families suffering from diseases, today announced the launch of its new corporate website, cyclotherapeutics.com. “As we drive development of our potentially life-changing...
GAINESVILLE, Fla. – Cyclo Therapeutics, Inc. (Nasdaq: CYTH) (“Cyclo Therapeutics” or the “Company”), a clinical stage biotechnology company dedicated to developing life-changing medicines through science and innovation for patients and families suffering from diseases, announced today it has appointed Lori McKenna Gorski as Global Head of Patient Advocacy. “The unmet needs of...
NEWARK, Calif. – CymaBay Therapeutics, Inc. (NASDAQ: CBAY), a clinical-stage biopharmaceutical company focused on developing therapies for liver and other chronic diseases with high unmet need, today announced that seasoned biopharma executive Lewis Stuart has joined the company as Chief Commercial Officer. Mr. Stuart brings more than 25 years of...