irefuseeb.org
Share your Journey with Epidermolysis Bullosa
http://irefuseeb.org/living-with-epidermolysis-bullosa
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. Through the Eyes of a Survivor. Make an impact and share your story. How has Epidermolysis Bullosa changed your life? Are you a parent, advocate, caregiver? If you would like to submit a video or story please contact us at irefuseeb@gmail.com. Faith H...
irefuseeb.org
Providing Support to Families dealing with Epidermolysis Bullosa
http://irefuseeb.org/advocates-corner/family-support
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. I would like to share with you one family’s story about how not only the community supported them, but also several other EB moms and a very amazing advocate! Sandy did Anton’s first dressing change once we got home and taught me a lot about EB ...
gm-123.org
Gangliosidosis Info
http://www.gm-123.org/info
Lysosomal Storage Disorder - Genetic Brain Disorder - Inborn Error of Metabolism and Metabolic Disorder. Some Signs and Symptoms of Type II Gm1 Gangliosidosis which begin between the ages of 1 and 5. Ataxia (Uncoordinated movement is due to a muscle control problem that causes an inability to coordinate movements. It leads to a jerky, unsteady, to-and-fro motion of the middle of the body (trunk) and an unsteady gait (walking style). It can also affect the limbs.). What causes Gm1 Gangliosidosis? Mutation...
gm-123.org
Gangliosidosis Info
http://www.gm-123.org/gm3-info
What is GM3 Gangliosidosis? A ganglioside biosynthesis disorder caused by (N-acetylneuraminyl)- galactosylglucosylceramide N-acetyl transferase (E.C. 2.4.192) deficiency with excessive accumulation of ganglioside GM3 in the liver and brain tissue and absence of higher ganglioside homologs. Clinical features include limpness, retarded psychomotor development, coarsening of facial features, macroglossia, gingival hypertrophy, hepatosplenomegaly, inguinal hernia, and stubby hands and fee...
thislittlelightblog.wordpress.com
July | 2012 | This Little Light
https://thislittlelightblog.wordpress.com/2012/07
Meet Little Lights Shining. Capturing your little light shining…. A little heartbreak, a little hope…. The good news is that Charlie is in a great place and they will fight for him. He will be getting his new cells sometime on Saturday. Please pray for Charlie as he receives his new cells. Pray that they will multiply fast so that Charlie can get back to the business of living. Please check out this link to find out how you can take part in Twenties for Charlie. The moment that we were. Being there as Ja...
irefuseeb.org
Reaching Out to Policy Makers -
http://irefuseeb.org/advocates-corner/advocacy-resources/reaching-out-to-policy-makers
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. Reaching Out to Policy Makers. Find your US Senator. 8211; United States Senate. 8211; United States House of Representatives. You must log in. To post a comment. University of Minnesota Foundation. U of M BMT Center. University of Minnesota Foundation.
irefuseeb.org
Sample Letter -
http://irefuseeb.org/advocates-corner/advocacy-resources/reaching-out-to-policy-makers/sample-letter
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. As a passionate advocate, I am writing about an issue that is very important to me: medical research funding. Specifically, I am writing to urge you to support an increase in funding for the research of a rare disease Epidermolysis Bullosa. In order t...
irefuseeb.org
Epidermolysis Bullosa Organizations -
http://irefuseeb.org/eb-resources
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. By teaming up with the research team at the University of Minnesota, pioneers in stem cell transplantation. For patients, families and friends, a diagnosis of Epidermolysis Bullosa carries with it great uncertainty. There is so much to learn about...
irefuseeb.org
Raising funding for Epidermolysis Bullosa - Events and Fundraisers
http://irefuseeb.org/advocates-corner/fundraising
Living with Epidermolysis Bullosa. Through the Eyes of a Survivor. This Little Light Blog. Meet Advocates for Epidermolysis Bullosa. Connecting with Local Media. Sample Letter to the Editor. Reaching Out to Policy Makers. Advocacy Resources and Information. Here are some helpful tips to guide you in this process:. Ten Steps for Hosting a Successful Fundraiser. What is your goal? Create a committee and choose a leader for the committee. Determine how. Revenue from the event. You should try to keep exp...
gm-123.org
GM1 Gangliosidosis Info
http://www.gm-123.org/gm1-info
What is GM1 Gangliosidosis? Which is uncoordinated movement is due to a muscle control problem that causes an inability to coordinate movements. Or loss of brain function which affects memory, thinking, language, judgment, and behavior. Which is enlargement of the internal organs in the abdomen, such as liver, spleen, stomach, kidneys, or pancreas. Can be present in the infantile form. When 2 carriers of an autosomal recessive condition have children, each child has a 25% (1 in 4) risk to have the condit...
