Over the weekend, I was elected President of the Chip Miller Amyloidosis Foundation. The charity was founded in 2004 after my friend Lance’s father died from a rare disease called amyloidosis. Chip Miller and his partner Bill founded Carlisle Events many years ago and ran the business together until Chip passed away suddenly in 2004. Today, Lance and Bill’s son Billy have taken the reigns.
In honor of Chip, they created a charitable foundation with two goals: 1) to raise awareness about amyloidosis and 2) to raise funds to help fight the disease.
Michele, Lance’s wife has been the President and has run the Foundation since its inception. Lance and Michele welcomed little Ella Corvette Miller into the world this past February and Michele decided it was time to pass on the Presidency. I am honored and humbled to take on such an important role in building on the success they have achieved. I hope to use my marketing and healthcare experience in spreading the word and finding a cure along with the rest of our amazing Board of Directors.
What is amyloidosis you ask? 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.
Our goal is to work with the National Amyloidosis Association to make the disease a household name so it can be diagnosed early and lives can be saved.
I will continue to share information about the Foundation and our efforts over the coming months. I hope that you can join us at an event or can donate money to this important cause.