As Community Members know from recent posts, news coverage following the death of comedian Bernie Mac has resulted in a substantial increase in the exposure this ‘little known’ disease has received from both local and national media. Over the last two weeks, the Foundation’s staff has responded to dozens of requests for interviews with expert physicians and those with the disease, who we acknowledge are experts in their own right, to help explain the complexities of sarcoidosis.
Several of you have added links to articles; you have our continued thanks for the generous manner that information is shared here in the Community. I wanted to take a moment to publicly thank a few people who were quick to respond to our requests. In particular, Drs. Dan Culver (Cleveland Clinic), Kyle Hogarth (U Chicago), Marc Judson (MUSC) and Dave Moller (Johns Hopkins) gave compelling explanations of the disease in terms that any patient or clinician could understand. I am also grateful to Sandra Conroy, Brenda Harris, Gwen Mitchell and others on our Support Group Advisory Council who shared their personal stories along with Board Members Karen Duffy and Andrea Wilson.
I am including links to two articles below, they are likely the same ones many of you have already seen.
ABC News (interviews with Dave Moller & Andrea Wilson)
Chicago Tribune (interviews with Sandra Conroy, Brenda Harris, Gwen Mitchell & Andrea Wilson)
All of this publicity has meant that the Foundation has seen significant increases in the numbers of individuals requesting free educational information. In the last two weeks alone, we have fulfilled more than 400 requests for brochures and other awareness materials and have the Advisory Council working to help start at least a dozen new groups. Inspire tells us an additional 140 users have joined the Community too, welcome to all of you!
While it may not be entirely clear what role sarcoidosis played in his death, our sympathies are with the family of Bernie Mac and all those who have lost or are in danger of losing loved ones to this disease. Because we know that sarcoidosis can be serious and even life threatening especially if patients do not know they have it, we are proud to be able to offer patients a reputable resource for up-to-date information. All of our brochures are available to patients free of charge. For more information, please visit www.stopsarcoidosis.org or call our offices at 866-358-5477.
Debbie Durrer, Executive Director