Evan & Graham in Baltimore

 


Evan with Dr. David Lynch in Philadelphia

 

Welcome…

To the Evan Michael Luebbe Fund. You have most likely been given a link to this website because you are a family member, friend, co-worker or friend of a friend of the Luebbe’s (Tammy, Greg, Evan and Graham).

This fund and site have been set up as a result of the news from doctors diagnosing Evan with Friedreich’s Ataxia on October 7, 2004. Friedreich's Ataxia (FA) is a very rare neurodegenerative genetic disorder, that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. It is an inherited genetic disease which a person is born with and to date, there is no cure. Friedreich's ataxia, although rare, is the most prevalent inherited ataxia, affecting about 1 in every 50,000 people in the United States.

I am Tammy’s twin sister Pamela. I have set up this site to serve several purposes:

  • To educate people about Friedreich’s Ataxia
  • To provide resource links to FA sites for research contributions
  • To provide a way for people to directly assist the family or donate to FARA (Friedreich's Ataxia Research Alliance)
  • As a resource center for getting updates

I remember when I initially found out, my first reaction was one of disbelief, frustration, then anger. My second reaction was “how can I help ? ”. If you are looking for a way to assist the family directly or indirectly, please go to the “Ways to Contribute” area for more information.

Thank you for your support.

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Evan's Quest for a Cure Dinner

2011 Summary