A Fifth Season…Brightening the Landscape of Batten Disease
Rare Disease Event: Three Foundations Form First Chicago Partnership To Fight LINCL-Batten Disease Jasper Against Batten, Hope 4 Bridget and Noah’s Hope To Collaborate with Partnership For Cures One man ran across the United States to help children with Batten disease. Will you drive across town to help? Please join us on May [...]
Advocacy Update and The Flammable Heart Exhibition
The Charles August Long Undiagnosed Diseases Act of 2011; the battle to save community health center funding and keep Medicaid intact; The Walking Gallery; and The Flammable Heart Exhibition.
Happy Birthday, Tarsila!
We wrote earlier this year about Tarsila, a little Brazilian girl with a long and complicated medical history (post here). Tomorrow, October 14, Tarsila turns two. She now has five teeth, and lately she even tries to talk, get up and grab whatever objects she can find. She seems to have a bit more strength, [...]
Ten years of Human Genome
Ten years ago, Peter Collins and Craig Venter, leaders of the Human Genome Project anounced they had completed the first draft of the human genes sequence
Ella – Shine the Light on Aniridia
hortly after being born in 2006, Ella was diagnosed with WAGR syndrome, a rare chromosome disorder. Now, their parents are looking for a treatment that could save her eyesight.
Today is Paramyloidosis Observance Day
Paramyloidosis, also known as familial amyloid polyneuropathy, Corino de Andrade’s disease is an inherited neurodegenerative condition characterized by deposits of an abnormal protein called amyloid in various parts of the body
What is the matter with Tarsila?
Tarsila is a year-and-a-half-old girl who suffers from an undiagnosed medical disorder. She cannot sit on her own or crawl, she still has no teeth, and she can only mutter some sounds.
International Batten Disease Awareness Weekend (June 4-6)
This weekend is International Batten Disease Awareness Weekend, an event intended to unite people worldwide to pursue the common goal of raising awareness and understanding of this rare genetic disease, while also enhancing fundraising activities and providing hope to children and families living with Batten.