Today’s Honoree is Jeff Wuchich

Jeff Wuchich, president of the Alternating Hemiplegia of Childhood Foundation has worked tirelessly to raise awareness of Alternating Hemiplegia of Childhood, a rare neurological disorder affecting one in 1 million children. AHC causes bouts of temporary paralysis affecting one or more parts of the body, lasting from a few minutes to even days. AHC also causes severe learning, behavioral and movement disabilities among some sufferers. Currently the disease is both incurable and permanent, but Jeff and the AHCF are working hard towards a cure. Part of their work includes the “1 in a Million” campaign, which aims to raise $1 million for the AHCF in 2012. Jeff’s son Michael has AHC, and he is working as an advocate for all parents of children with AHC.

In 2010, Jeff helped the AHC Foundation win $250,000 in Pepsi’s Refresh competition. The AHC Foundation must raise $1 Million in 2012 or critical research WILL NOT HAPPEN! But with your help spreading the word, we will raise it 1 person, $1 at a time. “Will you be 1 in a Million?” Thanks in advance for saying “YES”!

The statistics around rare disease are astonishing. 1 in 10 Americans is affected by some type of a rare disease. That’s a huge number of people – 30 million in the U.S. according to the NIH (and over 350 million worldwide.) Did you know that there are 7,000 different types of rare diseases? The amount of drug approvals for the entire rare disease community each year is extremely low – potentially only 5 or so drugs a year out of a 21 total drugs the FDA approves. To date, only 5% of rare diseases have a treatment! For 95% of rare diseases, there is not a single approved treatment.  AHC is one of those 95%!

There are several things the AHC Foundation is doing, not only to help raise awareness for AHC, but also to help in the general awareness of Rare Diseases:

  • The AHC Foundation will be joining NORD (the National Organization of Rare Diseases) – the voice in Washington for all who suffer from rare diseases.  Supporting them helps ensure our AHC kids & adults will get the attention at the federal level that they deserve
  • We have an awareness & fundrasing campaign in store for Feb./March, with big plans for Rare Disease Day that will (we believe ) capture mass media attention
  • We will have a number of our parents putting on events in their local communities to promote awareness of Rare Disease Day & of AHC in conjunction with our fundraiser.
  • We will continue to attend the US Conference on Rare Diseases & Orphan Drugs Hosted by NORD & EURODIS in October at Washington, DC, like I did last October.
  • We will share Matthew’s story on the Global Genes Website.

WIth the advancement of technology, the answers to rare diseases are within reach,  The good news as the answers that come from rare disease research may have great benefit for more prevalent diseases.  For example, nearly 50% of AHC sufferers, including my son Matthew, have epilepsy.  Breakthroughs for AHC could mean breakthroughs for the millions who suffer from epilepsy as well.

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