Sharon Terry is a mother of 2 children who have a rare disease known as pseudoxanthoma elasticum (PXE). Watch her inspirational speech where she discusses how she and her husband worked to establish mandates that require researchers to share biological samples and work together. Beyond Batten Disease Foundation has followed that model since its inception.
Great video from the Grace Wilsey Foundation! Rare is NOT an excuse.
What is your WHY? Sabrina shares what motivates her in the fight against Batten.
Just think what we can do if we keep going…and growing.
Did you catch hear Mighty like a Rose on KOOP 91.7 FM with Ted Branson this morning?
Visit Beyond Batten’s website to download your copy of Mighty Like a Rose and proceeds will benefit Batten reseach.
Eight-year-old Garland Benson shares what it is like living with a sister who has Batten disease.
Steel Herndon shares what it is like living with a brother who has Batten disease.