| Senator BarbaraBoxer’s Introduction ofSharon Monsky

I want to now go to my functionfor the day, which is to introduce to you a woman who has made ahuge difference in my life, motivating me to bring attention to adisease called scleroderma. I have to do it just because I knowSharon, and Sharon is counting on me. Today, all of you will knowSharon and all of you will feel the way I do, and you will all bechanged. For people who say one person can’t make adifference and what’s the difference, meet Sharon Monsky. Ifyou were lucky, you met Elizabeth Glazer who was the one who saidpediatric AIDS is different, and we must look at it differently,and people here did after that. So you’re about to have agreat honor. Let me tell you about Sharon. First of all, verysoon there is going to be a special on television, adramatization that’s going to bring home the message ofscleroderma to the whole country, and everyone’s going to betalking about it because it’s going to be on prime time.Sharon’s in it, and when you watch this, you will know muchmore because you will have heard Sharon today.

Sharon Monsky was on the fasttrack as an international business consultant in San Francisco inthe early 1980s when she started to get sick. It took 2 years tofinally diagnose her disease—2 years. When first diagnosedwith scleroderma in 1983, Sharon was given less than 2 years tolive. Fourteen years later, she has beaten those odds and hasbuilt a research foundation that gives hope to hundreds ofthousands of people. Doctors said she had 2 years, and she’shere to tell us about the meaning of her life. She started theScleroderma Research Foundation when no one ever heard ofscleroderma.

She founded this researchfoundation, the only organization in the country dedicatedexclusively to finding a cure for scleroderma, raising the moneyby sheer willpower, going to people in Hollywood and everywhereelse and saying you have to do this, you have to help. Everyonewho is touched by her is changed.

Scleroderma affects 500,000Americans—80% are women. The disease occurs when for unknownreasons the immune system begins to attack itself, manufacturingmassive amounts of collagen. The collagen produces fibrous scartissues that harden and thicken the skin of the face and hands,and chokes off internal organs, interfering with their normalfunction. When I introduce Sharon, I hope you will give her thewarmest applause. The courage that it takes to do what she didcannot be overstated. And so I introduce you to a special humanbeing who will change your life, and I want to thank SusanBlumenthal for having her here today. It’s my pleasure tointroduce to you Sharon Monsky.

Sharon Monsky

Thank you very, very much, SenatorBoxer. Barbara, you’ve been so wonderful, so dedicated, sosupportive all these years, since you’re my Congresswomanand you’ve made it happen. You’ve helped us turn thecorner and I’m just so touched. You’ve watched theScleroderma Research Foundation from its infancy when it was justme and 2 volunteers, to a young, exciting, fledgling organizationand now to what I truly agree is a premiere organization forscleroderma research in the country, and knowing that we willfind a cure for this disease. I’m eternally grateful for allyou’ve done for women in this country, for the sclerodermaefforts. You’ve turned over every stone, you turned theglobe for me, and all you’ve done for me personally. Iremember when you walked on the Senate floor. No one could havebeen prouder than me to call you my senator.

My address today is listed underthe personal auspices of Personal Perspectives on AutoimmuneDisease. I can cover my personal perspective in about 20 seconds.Scleroderma is an extremely debilitating, ugly, painful, delayedkiller. The people that it affects are not ugly. I certainlydon’t define myself by this disease. I’m abusinesswoman. I have been since I graduated from the StanfordGraduate School of Business in 1980 and went to work as aninternational management consultant with McKenzie and Company.Back when I took my client’s goals, their business goals,and helped them be successful. I wrote their strategic planswhether it was making better potatoes, putting better cereal onthe shelves, I made them successful. And now I have a privilege,a much greater privilege. I’m in the business of finding acure for scleroderma. And the best thing of all is that I’min the business to go out of business.

When I first started theScleroderma Research Foundation in 1987, the idea was simply tofind a way to find the highest quality medical research thatmoney could buy in scleroderma. I researched nonprofit managementand found both sides of the expression lacking. To me, it meantnot making any money and controlling an environment. I aminterested, instead, in growing a successful organization andgenerating as many dollars as possible for the bottom line. Whenwe first started, we reviewed research proposals as many othernonprofit and health research organizations do, and simply lookedfor the best available science. Through this method, we were ableto help develop one of the first accurate diagnostic tools forthe disease, the nail flow capillary test. By giving clinicians aquick and minimally invasive diagnostic tool, we began to see arise in the incidence of the disease, which confirmed what we allknew, that we were very close to the disease all along. One ofthe main reasons scleroderma is so little known is becauseit’s so often misdiagnosed. We became more and morefrustrated with this approach to research and began to ask thebest available people in the field why they and why the besttechnology weren’t being applied to this disease. It was areal problem. It was a real bind—it was a catch-22 really.Researchers and technology largely go where researchers andtechnology already are, and the best young minds certainlydon’t enter a field with little opportunity for futurefunding or enough basic science from which to develop someanswers.

We organized our approach intowhat we now call cure advocacy. It means asking what is necessaryto find a cure and then working backwards to make it happen.Given how little we knew about scleroderma, it doesn’treally fit into any of the predesigned boxes for the diseaseresearch. It certainly wasn’t just a skin disease, becausethe thing that made it often fatal was the internal organinvolvement. It clearly wasn’t just an autoimmune diseasebecause the disease is notoriously resistant to immunosuppressanttherapies. It also wasn’t just a connective tissue disorderbecause the vasculature appeared to be implicated in itspathogenesis. What became clear out of all this was that weneeded a cross-disciplinary, multi-institutional, collaborativeresearch program which worked backward with a goal of finding acure.

When I first said this to businessassociates they said of course, this makes sense. When we spoketo the scientific community, they said how could we possible doit that way? The system of scientific research being built oncareer concerns, competition, publishing demands, why would theybe willing to share ongoing information, submit to a guidedresearch program, or focus on failures, which were to beconcealed as well as possible? One of the exciting things for theresearch centers and the investigators who have committed theircareers to this: they are excited about the failures that theyshare. They learn from going down the wrong path. The first testof our new approach was the November 1992 opening of thenation’s first collaborative scleroderma research center. Wewere able to, in San Francisco, have a collaborative effort, acenter without walls between Stanford University, University ofCalifornia-San Francisco, and Genentec. And it’s working.They’re making incredible progress, unprecedented progressin designing accurate diagnostic measures, developing diseasemodels, and understanding the role of key cells in the diseaseonset, to really get their arms around the disease as a whole andunderstand its triggers. The interest generated within thescientific and medical research community afforded the Foundationan opportunity to create an additional center, the East CoastCenter, so there’s now a collaboration between JohnsHopkins, University of Maryland, NIH, and the Baltimore biotechcorridor. The second center is focused on understanding vascularand skin changes in scleroderma patients, with special emphasison helping to advance therapeutic techniques to slow thedevelopment of the disease process.

This spring is really exciting.The foundation sponsored a special symposium to bring togetherthe research team and the advisors who across the country sharetheir results and their progress, and allow some real directcommunication. Well, it was a fantastic workshop, and I wassurprised that what should have been 6 hours lasted a day and ahalf. My only problem was I couldn’t control the agenda, andwe were constantly off schedule. So many advisors gave their timefor free; they were really dedicated to this approach. To havethem at 10:00 at night still wanting to meet with me, to tell mehow great what we had accomplished was, gave me renewedcommitment.

I’ll just give you one quoteby one of our advisors, Dr Regis Kelly. He is currently thechairman of cell biology and biophysics at the University ofCalifornia-San Francisco, and he is also a good friend who hasbeen involved from the beginning. He said, "In all my yearsof medical research, I have never seen a more concerted effort atsolving a problem, and one in which so much progress has beenmade so fast, and that includes all the money and people workingon HIV." So that really helped me to think about each daythat I can live until today, and I’m going to get bettertomorrow, I’m going to beat this, and I’m solucky—I’m so lucky that there are so many of you thatare friends here that have been so supportive. I’ve beenreacquainted, and able to work with Dr Steve Katz, the supportfrom our Senator, Senator Boxer, and my 2 very good friends whoare here today, and you will hear them speak at the luncheon, whowill tell you all about the movie, because they’re making ithappen. And thank God they brought me all the way from Californiato be here today—without them I couldn’t do it—BobSaget and Dana Delany. So thank you. I made it—thank you.

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