by Shannon Reed Amera is our sweet 3 year old daughter who battles an extremely rare genetic disease called ACER3 related early childhood onset progressive Leukodystrophy. There are only about 20 known cases of this type worldwide! Our daughter was diagnosed with this progressive disease at age 2. She was initially presumptively diagnosed with other …
The ULF received donations in memorial or honorarium for the following during the month of January 2021. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Aryabella Haeger Shannon Wright – In behalf of Star Chaser Crafts Aveline Brendel Lyndsay …
In honor of Rare Disease Day, we have come together to raise funds for type-specific programming. This shirt sale is made possible by a collaborative effort among these amazing organizations that will help offset future costs of type-specific programming. We are all in this together. Orders will be shipped directly the address that you specify. …
