October 7, 2013 at 12:18 PM
BERKELEY HEIGHTS, NJ - Luc Angevare and his family raised $400 at a Dutch themed bake sale on Saturday, Oct. 5 to support and raise awareness for the Rare Disease Alliance. Several friends, neighbors and teachers from the community stopped by to support the event. The Angevare family has generously matched the amount and will donate $800 to three organizations dedicated to improving awareness, care and treatment for patients afflicted with rare diseases including: Rare Disease, Nomid Alliance and Stop Caid Now.
Luc, a third grade student at Mountain Park School, is passionate about this cause because he is afflicted by the rare disease, CAPS (Cryopyrin-Associated Periodic Syndromes).
As a baby, living in the Netherlands, Luc had very low muscle tone and could not sit up or walk and was often sick. “It was when he was five, they said we think it is PFAPA, Periodic Fever Syndrome,” said Luc’s mom, Saskya. Since the family moved from the Netherlands to the United States, “We know now, because of genetic testing, it is not PFAPA it is CAPS, a rare mutation.” Luc is the only person in the world with his specific mutation.
CAPS are part of the growing family of autoinflammatory diseases. (Not to be confused with autoimmune disease such as Lupus or Rheumatoid Arthritis.) A person with CAPS has a genetic mutation that affects their body's ability to shut down their inflammation makers, so their body is constantly under attack.
“We feel very lucky that we have very good insurance, but a lot of people don’t. That is why we do fundraising,” said Saskya.
NIH (National Institute of Health) provides research, however, with the recent government sequestration, the NIH lost almost all of their funding. Out of the 327 people in the world with this disease, the NIH has kept 100 families with the traditional disease in the program according to a parent advocate.
Sakya will be hosting an evening social event, “Ladies RARE Fair”, with local vendors to raise awareness for rare diseases on Friday, Oct. 25 from 7 to 9 p.m. at 144 Cornell Avenue, Berkeley Heights. Donations and proceeds will go to Rare Disease, Stop Caid Now and Nomid Alliance.