I was diagnosed with Lou Gehrig’s Disease (ALS) 2 months ago. Since then my world has been turned upside down. I have accepted the grim news that this is one battle I might not win because there is only one medicine (which I am taking) that prolongs the lives of ALS patients for a short time. But there is hope-Brainstorm has been using Stem Cell therapy and they have had some success, and they are beginning a third phase trial at Massachusetts General Hospital.
I am off to Johns Hopkins on Monday to meet a world-renowned doctor who specializes in ALS. Johns Hopkins is well known for its treatment of ALS patients, its oustanding ALS clinic, and clinical trials.
And now to the Fox 5 DC interview with John Lokay, which I very much appreciated. It gave me a chance to bring attention to ALS and introduce DCMetroTheaterArts, and our work on behalf of the younger performers on our local stages – which has been my crusade for many, many years.
My brother Saul, who is a great PR guy knows Jim Lokay and Jim agreed to interview me and my writer John Stoltenberg who, along with David Siegel, have become my voice since this horrible disease has made me sound like a goose. Saul has known Jim Lokay from his Pittsburgh days.
Watch the two-part interview here:
The theater community that I love and have promoted for many years has rallied on my behalf.
The Board of the Gary Maker Award has awarded a special lifetime award to me. Gary was a good friend and he died from oral cancer, which he fought so bravely and courageously. He has inspired me to fight ALS with all my soul and strength.
Lorraine Treanor of DC Theatre Scene and Carolyn Griffin of MetroStage have planned a cabaret for me on Monday, May 1st at 7 PM, where The Gary Maker Award will be presented to me.
You can purchase tickets here:
Also local actress Emily Canavan started a Go FundMe Page to help pay for medical bills and Stem Cell treatments:
There’s the update.
Those who know me know that I am very strong with a punny sense of humor, who is dedicated to showing off the richness of our DC/MD/VA, Philadelphia, DE, NYC, and NJ theater communities.
The DCMTA family is determined to keep the legacy going, and I want to say thank you to them for all their hard work, love, and support. And thanks to Lorraine, Carolyn, Emily, and the Board of the Gary Maker Award for their support and this great honor. It will truly be cherished.
And thanks to the theater community for your best wishes and prayers. Me and my 5 brothers and my bf appreciate your support.
So there’s the update. I don’t know what will happen next, but this disease doen’t know they picked on the wrong guy. I’m tough as nails. I’ve beaten other health problems where I was told there was little or no chance to beat them. But I did.
I’ve kidded my family and friends and that anyone who could survive a Jewish mother, 6 back surgeries, 2 knee surgeries, 9 years at NIH, and watching 12 productions of Legally Blonde in one year – is one tough cookie!!