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Scleroderma Strider Success Stories

My Story
By Amy Crump, Tempe, Arizona

On January 14, 2007 my mom and I will be running the PF Chang's Rock n Roll Half Marathon in Tempe, Arizona and raising funds for the Scleroderma Foundation. What is scleroderma? Scleroderma is an autoimmune disorder that literally means "hard skin". There is an estimated 80,000 to 150,000 people in the United States who have scleroderma. It can develop and is found in every age group, but its onset is most frequent between the ages of 25 to 55. There is no cure for scleroderma. Some of you may already know, but this is the disease that I nearly died from 11 years ago.

On November 17, 1995 I was admitted to our local hospital back in MI after flying across the country from Alaska . Within minutes of being admitted my body began to shut down. I was in kidney failure, congestive heart failure, my lungs were filling up with fluid and my blood pressure had skyrocketed to 200/138. I was quickly transferred to the intensive care unit were my condition continued to worsen over the next 2 weeks. My doctors advised my parents that I would probably not be leaving the hospital and they would make sure I was in no pain. This was obviously unacceptable and my parents quickly asked to have me transferred to another facility. I was quickly moved to a larger teaching facility and began to improve within days. By the third day I was moved out of intensive care, remained in the hospital for 2 more weeks and was finally discharged right before Christmas. We had a very simple Christmas that year, no tree, just thankful that I was home. On Christmas morning we placed a ribbon around my neck, as that was the only gift we needed.

I left the hospital on kidney dialysis, which I did on my own 5 times a day. I also had a long recovery ahead of me, as I was extremely weak from my month long hospital stay. Scleroderma had left me stiff, and unable to do the simplest tasks as bending over to tie my shoes, get out of a chair, or simply walk longer that a few feet. I could no longer drive my car, as I was too weak to push in the clutch; nor could I hold onto the steering wheel as my hands were also affected.

Over the next several months I continued to try and regain my strength and head back to school for my last internship program. The following days were difficult dealing with my dialysis and my weakness, but I continued to improve. My doctors had determined that I would be a good candidate for a kidney transplant and my family and I had decided that my father would donate one of his kidneys to me. About one week after my transplant evaluation, miraculously my kidneys began to work on their own and I was able to stop my dialysis. My kidneys have continued to work on their own!

As I continued with my recovery my mom decided to start running and train for a 10 mile race in MI. Little did I know, until she finished that first race, that she started to run for me as I could no longer do the athletic events that I once loved. She has continued to run occasionally, and once again ran/walked that same 10 mile event in MI this past summer.

Now that I am healthy and strong I asked my mom if we could run a race together. On January 14, 2007 we will run in the PF Chang's Rock n Roll Half Marathon, a 13 mile race. My goal is to keep up with my mom so that we can cross the finish line together, as a team. We are both training very hard and will be running for all of those who cannot.

I continue to have some limitations from my scleroderma, reduced lung function and some skin tightening mostly on my hands and face, but it has not stopped me from doing the things I love. I am lucky, I survived and there are many that are not that fortunate. Please join us in helping raise money for scleroderma research so that no one else will have to suffer from this disease.

To learn more about scleroderma log on to: Go here

Please feel free to pass this on to your family and friends. If you are in town, come cheer us on, we can use all of your encouragement to help us cross the finish line!

Thank you for you help and support!

Amy Crump

Running for Kaitlin and Grandma
By Jim Todd, Annandale, Virginia

I ran and, more importantly, finished the New York City Marathon on Sunday, November 7, 2004.

What an experience that was! To all of you who helped me achieve my goal, I owe a deep and heartfelt thank you for your generous donations to the Scleroderma Foundation. With your help, I was able to raise over $800 for this very worthy cause.

The race started on Staten Island at the foot of the Verrazano-Narrows Bridge. I have never seen so many runners in my life—thousands of participants, many from other countries. In the distance, Manhattan could be seen coming to life. On the other side of the bridge, we entered Brooklyn and ran for about 13 miles. It is truly an amazing experience to see so many spectators, adults and kids alike, cheering you on! Music of all kinds blared from apartment buildings along the race course.

At mile 15, we entered Queens. My adrenaline really rushed just after mile 16, when we made a sharp turn to begin our ascent up First Avenue in Manhattan. This is a tough part of the race course, since First Avenue is uphill for a couple of miles. Motivation came from the thousands of spectators lining either side of this wide avenue.

After leaving Manhattan and running through some of the Bronx, we turned again and came back into Manhattan where an even bigger crowd waited on Fifth Avenue. I started to get tired at this point. The sun was relentless, with no clouds in the sky.

At mile 24, we turned off Fifth Avenue and entered Central Park. Only two miles to go, thank goodness. I looked forward to the finish line. To stay focused, I thought about my daughter Kaitlin (she has morphea), and my grandmother Lois, who I was running in honor of. She had systemic sclerosis and passed away in 1979. This was a tremendous inspiration in the final couple of miles.

Summoning up all of my remaining energy, I crossed the finish line in 3 hours, 59 minutes and 52 seconds—just beating my goal of 4 hours! Then came the pièce de résistance, as a race official handed me a NYC marathon finisher’s medal. Mission accomplished!

The race statistics: 36,000 runners, 2 million spectators and 5 NYC boroughs. This was the 35th running of the New York City marathon, one of the world’s most prestigious races. This is truly where you get a sense of what it is to be in America. NYC is one of the great melting pots of our country. What a spectacular city!

I want to again sincerely thank everyone who contributed to the Scleroderma Foundation. Your support means a tremendous amount to my family and me. Kaitlin thanks you and I know my grandmother would as well. You all are the best! I hope that you and yours have a safe and wonderful holiday season.

Peace,

Jim Todd

Running for Scleroderma in the "26.2-Mile Block Party”
By Michael Ammirabile, Brooklyn, N.Y.

My name is Michael Ammirabile. In July 2003, my mother Anna Ammirabile passed away after a six-month battle with scleroderma. She was 62 years old. To honor my mother, and to help raise money for the Scleroderma Foundation, I participated in the New York City Marathon, which was held on Sunday, November 7, 2004. This 26.2-mile, five-borough journey is the premier running event in the New York City area.

Raising money for the Scleroderma Foundation was not something I planned on doing when I decided to run this marathon in early January. However, after reading about the Scleroderma Striders in an issue of the Scleroderma Voice, and seeing what they accomplish, I knew there was no better way for me to help raise awareness of this disease, to help find a cure, and to honor my mother Anna.

I began fundraising in the beginning of May, and the early start paid off. Through the support and generosity of family, friends, co-workers, and even strangers, I was able to raise $4,530 for the Scleroderma Foundation. I raised money by sending e-mails to friends, family, and co-workers by posting fliers at my church, and by word of mouth. I also attached the link for my website to the signature line at the bottom of my outgoing email. Since most people had never heard of scleroderma, they thanked me for making them aware of this rare disease and supported me with my fundraising efforts.

In order to train for the marathon, I followed an 18-week schedule, which I obtained from a marathon-training book I read in 2002. Since this was my first marathon, I followed the novice schedule, which included three weekday runs and one “long run” on the weekend. Total miles per week ranged from as little as 9 miles per week in Week 18, to as many as 40 miles per week in Week 15. Although on many occasions it was necessary to schedule my plans around training, it was at those times I thought about all the wonderful support I had received, and about my mother’s battle with this horrible disease. For me, those thoughts motivated me to continue training when my legs told me to stop.

On race day I was quite nervous, since I did not know what to expect. Fortunately, the weather turned out great and the crowds even better. Prior to the race, I heard that the New York City Marathon was called a “26.2-Mile Block Party,” and that is exactly what it was. With the exception of running over the bridges that span each borough, over two million people lined the streets cheering for the more than 36,000 runners, which included me running for the Scleroderma Foundation!

In the end, I completed the marathon in 4:24:20. Although there were many times during the race I thought about dropping out, or simply walking across the finish line, I didn’t. Because of the support from family and friends, as well as my mom’s spirit shining down on me, I was able to complete this great accomplishment.

Running for My Mom...One Strider’s Story
by Debra Kleban, Chicago, Ill.

I made the final decision to run my 5th Chicago Marathon on Labor Day, 2004. I had been training for the October 10 race earlier in the summer when I ran (pardon the pun) into trouble with my knees. But by Labor Day my knees were feeling fine, and I decided to try and raise $5,000 for the Scleroderma Foundation through the Scleroderma Striders program.

I wanted to run to recognize the 10-year anniversary of my mom’s death, caused by scleroderma. I wanted to try to make a difference in the search for the cure. I was amazed with the level of support I received. When I saw the email responses coming in, I was literally moved to tears by the kind words about my mom from those friends and family members who knew her and the supportive and encouraging statements from those who didn’t.

I printed my final webpage and plan to frame it with my poster and bib number and hang it in my office next to my four other posters and bibs. That way, whenever a client or colleague comes into my office and they see the poster, they will ask me about the Scleroderma Foundation! My motto is if we keep spreading the word, we will find a cure!

All in all, this experience was amazing! My mom was my biggest source of inspiration for the last five miles of the race. I kept asking her for strength and would not let myself stop and walk (which believe me, was tempting!) because I did not want to disappoint all of my generous supporters.

Setting up the fundraising website (www.justgiving.com) was easy! All I had to do was create the website and send the link to my family and friends! If I didn’t have email addresses for people, I printed the website out and mailed it to them. Now comes the time-consuming process. I've become a victim of my own success with almost 200 thank-you notes to write for the nearly $8,500 that I raised to help find a cure for scleroderma!