TMA Member Campaigns

Becky had difficulties climbing stairs well before she was diagnosed with inclusion body myositis. Over a number of years, she went from needing a cane, to needing a walker, to using a wheelchair for all of her mobility. Her first bout with aspiration pneumonia was difficult. Her second occurred 6 months later and was much more difficult to overcome. Her third bout occurred 4 months later and was the direct cause of her death at the age of 62.There is no successful treatment for inclusion body myositis so much work needs to be accomplished to tackle this insidious disease.

My journey with Myositis dates back 23 years and over time I have participated in numerous walks to raise awareness and funds to find a cure for Myositis. My web page: www.myomusings.com has been used as a tool by many folks worldwide who want to come to grips with this devastating disease, in my case IBM.This year's walk again has the same purpose: raising not only awareness but of course the much needed funds to further research for all forms of Myositis. Please join us to make finding a cure not just a hope but a reality! Our walk is scheduled for September 22, to recognize Myositis Awareness Day and our goal is to raise $5,000 with this event. Thank you for your support. Dagmar SlavenThe Myositis Association provides information and support to patients and families affected by myositis. The Association is actively funding research and works to educate physicians about this rare disease.Support you provide will be used wisely to help those who have to live with myositis today and in the future, while we continue to search for a cure.

4th of July 5K Run/Walk in Greendale Indiana. Chip timing with a flat course. All proceeds go to The Myositis Association for service and research. Dan had Inclusion Body Myositis for over 25 years and it was his desire and passion that a cause and treatment be found. This fundraiser is being done to keep that dream alive. Contact www.racedmc.com to register. All funds raised through this campaign will be 50% restricted to IBM Research Research and 50% to Programs and Services.

100% of your donation will be allocated to Unrestricted. I have Inclusion Body Myositis. It was a sad day when because of my IBM, I did not renew my Nursing License. On another sad day, I gave my bicycle to a Thrift Store. This disease has whittled away, slowly but steadily, at my mobility and coordination. Today, I need a scooter or power chair. Just one step unassisted is not possible. If I try to hold an object weighing more than a can of soup, I will drop it. Swallowing is a challenge. The good news is threefold. Last year I had tendon transfer surgery on my right hand. Once again I can tie, button and cut my food. several adaptive devices in my home enable me to have a reasonable level of independence. My best asset in the IBM battle is the fact that my husband is an angel in disguise! There is no cure or treatment for IBM but there is hope. Last January human Gene Therapy trials began. Laboratory animals have responded dramatically to this Gene Therapy. Results for human trials have yet to be published. However, it appears that there have been no negative side effects, therefore trials are progressing. On another front, a drug treatment is being investigated. The Gene Therapy and proposed drug treatment work on the same principle with the same end result: rebuilding and strengthening damaged muscle. I am happy to be one of the subjects in the Pharmaceutical Company's data collection phase. There is now hope that we can Defeat Myositis!

As a young child (age 5 or 6) I was diagnosed with JDM. It was a disease that no one in my family was familiar with and it took going to a multitude of doctors, specialists and medical tests to finally diagnose the disease. It seemed like it was over night I completely changed. I had always been a very active, athletic young girl - I enjoyed running around with friends, sports, swimming, skiing, anything outdoors. Suddenly, I was unable to do all of those things that I enjoyed, the things that made me who I was. My most vivid memory was sledding in my backyard with my younger siblings, once we reached the bottom of the hill, they jumped up and ran back up to the top, I was unable to get up, I felt paralyzed, helpless, embarrassed and was so incredibly confused. I owe a lot to my family who took me to only the best doctors and specialists, I remember spending a lot of time at Children's Hospital in Washington, DC, I went in regularly to get blood drawn and had to take liquid predinisone each day (which I hated). Because I was so young, I do not remember too much, nor was I at all aware of how serious the disease is. My family went above and beyond to keep me/my life from being overtaken by my illness - they kept me involved in sports (though I did not have the stamina I once did), made sure I retained my social relationships and maintained a positive outlook. I believe this, paired with the excellent care that I received was ultimately the reason I beat the disease and have been healthy ever since (I am now 27 years old).20 years ago when I was battling JDM there was not much known about the disease. Since then there has been a great deal of information and research that has come out about JDM.

For the 4th year in a row, several members of the Franklin family and close friends will turn the Under Armour Baltimore Running Festival into a family affair in honor of matriarch, Madge Franklin, A.K.A.“SUPER MOM.” This year the Franklin’s are stepping it up a notch. Daughter, Ouida will be running her first marathon while daughter, Nancy and son-in-law, Kai, are running their first half marathon. Other children, grandchildren, and friends are running the 5K again all in support of “Super Mom.” While they all might not be running the same distance, they will all be running to support Madge as she combats Myositis, the disease she has been fighting for over a decade. Myositis is a chronic inflammatory muscle disorder, which first signs include general tiredness, trouble standing from a seated position, difficulty climbing stairs, and weak grasp of objects. Madge suffers from all of these and more.Before Madge was diagnosed with Myositis, she was “Super Mom.” Not only did she raise eight children and take care of her many grandchildren, she had an open door policy to any of her children’s friends who needed a place to live. She was the president of several Parent-Teacher Associations, coached softball teams, drove her children and their friends all over Baltimore city and beyond, just to name a few of her selfless qualities. Now with Myositis, most physical activities are a challenge. She can no longer drive a car, hold any of her 21 grandchildren, or climb stairs. Even lifting a fork can be difficult. However, she is still a “Super Mom” and more to all of us.There is no cure for Myositis and even the underlying cause of the disease remains unknown. TMA is the only organization in the world solely dedicated to fight all forms of Myositis. Founded in 1993, it provides services and support to those with the disease and funds promising research. TMA has now funded nearly 20 research projects worldwide specifically related to Myositis. It is a rare disorder that affects only 1 out of 10,000 people which is the reason many physicians still know very little about the disease. With your support and that of others like you, we plan to change that. Support of our participation in the Under Armour Baltimore Running Festival will help raise funds in the fight against Myositis and offer hope to those like Madge, who live with this debilitating disease.In the spirit of Madge and her endless generosity, we are committed to raise at least $20,000 by October 13 to benefit The Myositis Association (TMA). We hope that we can count on your support. Any donation you can make to help us meet our goal would be most appreciated! All donations are tax-deductible. On race day, October 13, please look for us in the crowd of runners. Thank you for helping us to reach our goal so that we can help people like our “Super Mom” fight this disease.

I have been living with Inclusion Body Myositis (IBM) for several years now and have lost about 50% of my leg muscle and about 80% of my hand strength. Currently, there is no cure for IBM but research continues to look for the cause so they can work on a cure.Please consider giving generously to this campaign to help researchers in their work. A portion of your donation will go to help The Myositis Association continue their efforts to provide information and support to patients and families affected by myositis. The Association is also actively funding research and works to educate physicians about this rare disease.Support you provide will be used wisely to help those who have to live with myositis today and in the future, while we continue to search for a cure.

Dermatomyositis is a noninfectious inflammation of muscle tissue and skin.Dermatomyositis and its sister disease, polymyositis , belong to a large group of connective tissue disorders that includes lupus erythematosus , rheumatoid arthritis , and scleroderma (systemic sclerosis).They are all believed to be “autoimmune disorders,” where the body launches an attack against its own tissue. These chronic, progressive conditions lead to tissue damage. They can be serious conditions that require care from your doctor. The sooner these disorders are treated, the better the outcome. If you suspect you have this condition, contact your doctor right away.

.EVENT DETAILSRegistration fees and donations can be made via credit card through this site.WHEN? Saturday, October 26th 2013. 9:00 A.M. until noonWHERE? Centennial Park, 10000 Route 108, Ellicott City, MD 21042REGISTRATION FEES? (T-Shirt is included)Adults: $25.00 Children under 13: $15.00WANT TO DONATE? Online- Credit card payments are taken through this site.OR By Check- Make checks out to: The Myositis Association (Memo section: “Myositis Walk DC, MD, VA Group”) and mail to: The Myositis Association 1737 King Street, Suite 600 Alexandria, VA 22314 FOR MORE INFORMATION about the eventcontact Jenny Leonard at jennysilverb@yahoo.com or 770-891-3955JOIN US!!!Since Myositis is a rare illness, funding can be hard to come by. Yet through this event, we have raised over $40,000 during the past three years. This year, our goal is to raise an additional $25,000. Proceeds benefit the Johns Hopkins Myositis Center and The Myositis Association (TMA). Like previous years, we will hold a silent auction, have information booths from a variety of different specialties, a massage therapist giving free massages, entertainment, refreshments, as well as instructor-led warm-up exercises! Costumes are encouraged but not required.WHAT IS MYOSITIS?Myositis is a life-altering autoimmune disease that can cause muscle damage, pain, fatigue, weakness, and death. For many who suffer from the illness, it is a challenge to stand up, get out of bed, or walk. Some forms of the illness cause damage to the skin or to major organs of the body.

The 11th Annual Myositis Awareness Event

JUNE 14 and 15, 2013The Raynham Athletic Club will be sponsoring a 24 hour treadmill run on front lawn of their building. The run is in honor of Matthew G. Sullivan IV whom passed away from Dermatomyositis in 2012. Myositis is an autoimmune and muscle inflammatory degenerative disease that affects about 40,000 people in the US and 3,000-5,000 children. Help us raise our goal of $3,000.00 to help bring awareness to the devastation caused by this disease and aid in research for a cure. Event Details:Friday June 14 at 12 pm going non-stop until Saturday June 15 at 12 pmOnce we finish running come join us for a party at our OUTDOOR POOL from 12-4 pm! There will be music, raffles and food!All net proceeds will go to the Myositis Association.Not a member?!? That’s okay! Donate and the RAC will match up to $200.00 of your donation towards a new membership!