Team "Z Man" will be competing in the 2012 Walt Disney World Marathon on January 5th. Last year more the event at the Magic Kingdom raised over $250,000 to help us end Duchenne. Please sponsor our runners in the upcoming race. You can donate online by using the donate button next to the participant of your choice. If you would like to be a corporate sponsor, click here for information. As always, thank you for your generous support in helping us to end Duchenne muscular dystrophy.
Margie
I consider my self pretty fortunate. I was born healthy and raised in a very close and loving family by phenomenal parents with 4 fun and supportive siblings. I have found success in my career and in raising my own family. Life couldn't get better.....
As a Physical Therapist, I naturally noticed that my first born was not achieving the developmental milestones such as difficulty climbing stairs at age 2 or getting up from the floor without using a prop. I just knew, but never wanted to be wrong so bad. Devastation is an understatement when I describe how I felt when my son Zack's, diagnosis of Duchenne Muscular Dystrophy was confirmed. My perfect little boy was handed a death sentence. At the time, his estimated mortality was age 16 with wheelchair sentence by age 9. I grew to dread his birthdays.
Zack did get his first wheelchair at age 9, but was happy to do so, since walking 'started to hurt'. Frankly, he doesn't even remember walking other than that he felt self conscious because he was clumbsy. He has only once told me that life is unfair. Then he pulled it together and asked me to wipe his tears. Zack's courage, his optimism, and his inner strength inspire me to accept challenges, take risks and learn not to sweat the small stuff in this all too short of a life.
Now, 19 years old, still breathing on his own, and in college studying video game design, he continues to inspire me every day. He is brilliantly creative, more knowledgeable about cars than Jay Leno, and is a master with computers. Vital research has taught us to treat young men like Zack preventatively. Cardiac preserving medications, regular pulmonary checks and use of certain equipment has helped extend their average life expectancy.
I stil consider myself fortunate. I am fortunate that God gave me Zack. I have become passionate about raising awareness and I am fortunate to be in a community where my fund raising efforts have always been so well received and supported. Zack's Dad and I established the Zack Heger Foundation, http://www.zackhegerfoundation.org, through which we have been able to lend support to PPMD and other research based organizations in Boston. We plan to continue supporting research until this really mean disease is abolished. I never want to read another story like mine.
I am participating in the Walt Disney World Marathon Weekend January 5-8, 2012. I am running as part of the Run For Our Sons team. No member of Team Z-Man has ever run a marathon before. The team consists of my colleagues and one former patient who has endured multiple knee surgeries. I cannot tell you how emotional it makes me that they are making the commitment to do this. Tears to my eyes. They are heros.
The funds raised will go towards Duchenne muscular dystrophy research.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). At least 35% of the cases are random, as in mine. Meaning....anyone can have a boy with DMD.
Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. . Young men with Duchenne typically live into their late twenties.
Please support PPMD through Run For Our Sons.
Thank you for reading my story.
XOXOXO
Margie Lamir Heger, PT
Director of PT Dedham Health & Athletic Complex
Meghan
I recently ran my first half marathon in Newport with a co-worker pushing a young man with a neurological disorder in a wheelchair for the entirety of the 13.1 miles. I have never felt as accomplished as I had walking this young man across the finish line for the last 0.1 miles of the race. I knew that I had made a difference by helping him achieve a goal that he had never dreamt possible.
Duchenne is the most common lethal genetic disorder, and it is diagnosed in early childhood. The disease causes individuals to lose muscle function, and as a result, their independence. Parent Project Muscular Dystrophy is a nonprofit organization that strives to enhance the quality of life for individuals with Duchenne. Through fundraising and research, PPMD seeks to improve treatments for Duchenne and improve long-term outcomes for these individuals.
In January I will run the Disney World Marathon in support of Zack, his family, and all others alike. Zack faces immense challenges daily that I myself have taken for granted. He has graduated from high school and continues to make accomplishments with his entry into college this fall. Zack continues to live each day with a smile and determination, proving the strength he has to overcome his disease. His family’s fight for a cure and Zack’s ability to keep moving forward with each of life’s accomplished milestones has inspired me to make a difference, one step at a time. In January I will take this first step, and I will run for a cause that Zack and his family have the strength and courage to fight for daily. Thanks to the support of the Zack Heger Foundation I am able to attend this event and try to make a difference through raising awareness and money toward a worthy cause. To learn more about Zack you can visit his website at http://www.zackhegerfoundation.org/.
Please support our team: Team Z-man. Every dollar helps in supporting research to find a cure for not only Zack but the 1/3,500 boys and 1/20,000 babies born each year that share a common diagnosis of DMD.
Thanks for your support!
Meghan
Bethany
I’m running the Disney 5k race in support of Zack Heger and the amazing foundation he helped form for supporting research and people with muscular dystrophy. Zack is an inspiration for overcoming physical challenges and pursuing higher education as well as maintaining a close support system of friends and family. He and his mother Margie Lamir-Heger are leading the charge supporting essential research to find a cure.
I’ve been fortunate enough to have worked as a pediatric physical therapist in the past and have had the pleasure of getting to know many families of young boys and men who have MD. I ran a weekly aquatic group at the time for boys between 5 and 12 with Duchenne’s MD. The group focused on stretching the legs and trunk, increasing respiratory muscle strength and enabled them to meet other young boys who had DMD. The group was also supportive for parents who were able to help each other along the rehabilitation process and through the network of physicians. I’m running the Disney 5k Race to support them and Zack as well as to fund research for a cure. Thank you for supporting Zack and Team Z-Man in our efforts!
Thank You!
Bethany Costa DPT, CSCS
Bobby
As a Physical Therapist, I have seen patients battle and overcome a countless number of injuries and conditions. Each with their own unique story but none have effected me more than an internship I had at Massachusetts Hospital School. I was exposed to children with neurological issues that left many wheelchair bound or with extreme difficulty walking. It was a great experience to be apart of their rehab and make a positive difference in their lives. And at the completion of my internship, 2 of the students and a friend completed the Cohassett 10k Road Race together.
I now work at the Dedham Health and Athletic Complex where that passion to help others has only grown. I recently completed the Newport Half Marathon with a friend and patient of mine who was once a student at the Mass Hospital School. It was an incredible experience being none of us had ever run a half-marathon before never mind pushing someone in a wheelchair. The happiness we all had after crossing the finish line was a feeling like no other and made a world of difference for my patient.
I am now proud member of Team Z-Man and am excited to raise money in the effort to fight against Duchenne Muscular Dystrophy. This January we will all be going to Florida as a team to run the Disney Marathon. I couldn't think of a better group of people to run with and am honored to be involved. Even more so that the efforts are in support of my friend Zack. Zack is my boss's son and has DMD. I have had the pleasure of getting to know Zack and quickly realized how cool of a person he really is. Running a marathon was something I never thought I would sign up for but if it means helping a friend and raising efforts for a good cause, I would run it ten times.
I ask for your support in helping our cause and raising money for Duchenne Muscular Dystrophy research. Some people are not as fortunate as others and I truly believe the goal in life is to make a postive difference for someone else. I hope my excitement and passion inspires you to do the same.
Bobby
Stephanie
I will be running the 2012 Walt Disney World Marathon Weekend in January, to raise funds for the Zack Heger Foundation for Muscular Dystrophy (ZHF). I have never run a marathon, but my team and I will be running in celebration of Zack.
I first met Zack when he was 5 years old. He was a vibrant, energetic, little boy with a cute smile who would come in to the Physical Therapy office to visit his mom, Margie. He would bounce on the mini trampoline and roll around with the big exercise balls, curious about all the equipment we used that appeared to him as toys. I was a Physical Therapy student, doing my training at the Dedham Health and Athletic Complex Physical Therapy. He is now 19 years old and I have watched him grow in to the bright, young man that he is. I also watched him lose the ability to walk. Zack is now in a wheelchair but he continues to live each day with that same cute smile.
Zack is the son of my mentor, colleague and friend. Margie and I have worked together for the past 14 years. I am thrilled that Margie and I will continue to work together in another capacity. We have pledged to run the full marathon as a relay team. Margie will run the first 13.1 miles and I will finish the race.
His family’s fight for a cure and Zack’s ability to face the daily challenges of living with DMD is truly inspiring. I have been inspired to run and raise money for a very worthy cause. Every dollar raised goes directly to research. We are hoping to raise money towards finding a cure for this horrible disease. We are hoping to save Zack's life.
With your generosity and my successful completion of the marathon (fingers crossed!), we will end Duchenne. In anticipation of your support, I thank you for helping to save Zack and other boys like him.
Sincerely,
Stephanie Schwartz
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