I’ve always been an MS activist since my diagnosis. I immediately went into action, becoming a support group leader for the National Multiple Sclerosis Society. I was trying to help others, and at the same time I began years of hard work on fundraisers for my MS Center. My supportive family became active as well, and together we spread the word to those we know, and even to those we didn’t, about what MS was and wasn’t, and asked them to lend a hand in supporting our efforts.
I also wrote, at the request of the MS Center, short articles about being a mother with MS. These articles appeared in local newspapers. I knew that MS was a disease that few were familiar with. Anything I could do in my little corner of the world to educate people was something I was very interested in doing.
I didn’t know many famous people who were diagnosed with MS, and those I knew about I was unaware of their MS activism. There was Donna Fargo, the singer/songwriter (“The Happiest Girl in the Whole USA” and “Funny Face”). Barbara Jordan, the American politician from Texas who served in the U.S. House of Representatives after her diagnosis. Joan Didion, novelist and essayist, and Jimmy Heuga, Olympic medalist in alpine skiing. (Years later I found out some were MS activists, but in the pre-Internet age I hadn’t researched their whereabouts. Donna Fargo has been an activist, and Jimmy Heuga began The Jimmy Heuga Multiple Sclerosis Center, now known as the CAN DO Multiple Sclerosis Center).
I’d always hoped that if someone famous was diagnosed with MS, they might feel comfortable enough to use his or her star status to publicize the patient experience and create better awareness of what MS is. I didn’t wish this diagnosis on anyone, but if it were to happen, I’d hoped that person would help our cause either through education and awareness or donating/raising money for research and patient care.
Over the years some famous people were diagnosed and became leading MS activists, such as Teri Garr (actress, “Young Frankenstein” and “Tootsie”). She is a National Ambassador for the National Multiple Sclerosis Society and National Chair for the Society's Women Against MS program (WAMS). Annette Funicello began the Annette Funicello Fund for Neurological Disorders. Alan Osmond, formerly of The Osmond Brothers, received the Dorothy Corwin Spirit of Life Award from the National Multiple Sclerosis Society. Laurie Elyse, fashion designer and artist, produced a swimwear collection and donated a part of the proceeds to the National Multiple Sclerosis Society.
Now let’s fast forward to 2012. In today’s fast-paced world of social media, a place where news can be transmitted immediately to your laptop or cell phone, the world learns - together - when someone has announced their MS diagnosis.
The 2012 Presidential campaign is now underway; questions arose whether Ann Romney’s MS would hinder her from being an active First Lady. Within the MS community we know of her involvement with the National Multiple Sclerosis Society and how tirelessly she has worked to raise money, including efforts affiliated with Harvard University.
The MS community (simultaneously with the rest of the world) was rocked with the announcement of Ozzy and Sharon Osborne’s son, Jack, being diagnosed. MS groups on Facebook and Twitter were all abuzz with his news. We quietly wondering how it might help our cause. We are proud of their bravery in their announcement and how they vow to fight his MS, yet we also hope they will use their star status to help our cause, just as those before them used theirs.
Those of us who battle MS daily and choose to speak loudly about our struggles want others to learn who we are and what we need. We're trying to enlighten those around us. We should pat ourselves on the back for our efforts! Those who are famous - by birth or marriage or artistry - will hopefully lighten our load a little by spreading our message. When PEOPLE Magazine came out, and its front cover donned a photo of Sharon Osborne hugging her son, it read, “I Won’t Let My Son Die.” I thought to myself, “I hope the Osbornes use their celebrity to correct what the magazine obviously wrote to sell this magazine - MS is not fatal.” We will wait and see.
Published On: June 27, 2012