Amyloidosis – Surfing for a Cure

Amyloidosis. Bet you haven’t heard of it. Neither did I until I met Lance and Michele Miller. Lance’s Dad, Chip – the co-founder of Carlisle Events and avid Corvette collector – passed away from the rare disease in 2004.

On July 29, 2009, we celebrate the 6th Annual Surf Fest and after party for the Chip Miller Charitable Foundation in honor of Chip and to raise awareness and funds for a cure for amyloidosis. This is a good time to share some information about the disease – what you know just might save a life.

According to the Mayo Clinic :

  • Amyloidosis is a rare and potentially fatal disease that occurs when substances called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ.
  • Amyloidosis can affect different organs in different people, and there are many types of amyloid. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract.
  • Signs and symptoms of amyloidosis depend on the organs affected. The wide range of signs and symptoms often makes amyloidosis difficult to diagnose. You may even have no symptoms. Signs and symptoms may include: swelling of your ankles and legs, weakness, weight loss, shortness of breath, numbness or tingling in your hands or feet, diarrhea, severe fatigue, an enlarged tongue (macroglossia), skin changes, an irregular heartbeat, and difficulty swallowing.

Sounds like a lot of other ailments, doesn’t it? Which is exactly the problem. Because there are still doctors who aren’t familiar enough with this disease, diagnosis is often over looked. We at the Chip Miller Charitable Foundation strive to raise awareness so we can find a cure.

I didn’t have the honor of meeting Chip – but I know that his son is a testament to him. I’m proud to serve on the Board of the Foundation – and to call the Miller’s my friends. I hope that we can find a cure in my life time. So if you’re not doing anything on 7/29/09, come out to the 7th Street beach in Ocean City, NJ and surf, watch the surfers or join us at the after party at the Greate Bay Country Club in Somers Point, NJ. It’s a great cause and I know it will be a FAB day!

If you can’t make it out, you can still make a contibution by clicking here.

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1 Comment
  1. My father was just recently diagnosed with amyloidosis. We were fortunate to have it discovered at a very early stage, and the doctor was able to identify it quickly. We live within drivable distance to a Mayo Clinic, which also increases my father's chances. We have met another family who was not as fortunate, and we are so grateful for each and every day now.

    Thank you for recognizing the need for awareness, and associating yourself with this cause. It is great to see that events like these are going on in other parts of the country.

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