Team Cure CMD

Run or Walk the Long Branch ½ Marathon or Full Marathon May 2, 2010!

Cure CMD is participating in the Long Branch 1/2 Marathon on May 2, 2010 to raise awareness and funds to support CMD research.

Congenital Muscular Dystrophy has impacted each of our “Team Cure CMD” runners/walkers in a personal way; and they have each committed to raising at least $500 for Cure CMD.

You can support a Cure CMD Team member raise $500 in two ways:

1. Click one of the donate buttons below to donate funds via Paypal.  You can also send a check with the Cure CMD Team member’s name and the words Long Branch 1/2 Marathon to Cure CMD, PO Box 701, Olathe, Kansas, 66051.

You may donate in the name of a particular participant by clicking on the Donate button included with their story below.  If you’d like to give a general donation, you may use the Donate button immediately below.

Track Our Progress!

Each TEAM Cure CMD member has committed to raise a minimum of $500 for Cure CMD in the months prior to the marathon.
To participate:

• Go to the Long Branch 1/2 Marathon Registration Website:  http://www.njmarathon.org/Registration.html
• Download the printable application for either the 1/2 Marathon (Long Branch 1/2 Marathon) or the Marathon
• Contact Cecilia Kodoma for exact registration fee, cecdougk@verizon.net. Place a check for registration made payable to Cure CMD and the completed application in an envelope
• Mail to: Cure CMD, P.O. Box 701, Olathe, KS 66051.
• Deadline to enter as a Cure CMD Team Member is April 15, 2010..
• Email Cecilia Kodoma, Cure CMD TEAM organizer at cecdougk@verizon.net to let her know you will be joining the TEAM!  You will need to provide Cecilia with a picture and statement (see below).

For training tips: go to the NJ Marathon website, click on the link to “Training tips” and scroll down that page to “Other Training Programs and sources of Advice.” See especially MarathonRookie.com or go to halhigdon.com/halfmarathon.

For information on lodging: www.njmarathon.org/Travel_and_Lodging_info.html

Participants

Susan and Liam

I’m running this race to raise money in honor of all those people with CMD including my son, Liam, who has CMD type Ullrich. I’ve been privileged to meet many people with CMD because of Liam and they have become our extended family. I hope that the money raised can help raise awareness of this disease and promote research and ultimately treatment, cure or prevention for families in the future. Please help us with your donation!

Heather and Liam

I’m running for Liam, my best friend Susan’s son. I’ve known Liam since he was born and he is an amazing person! He doesn’t have a disability. He and Susan have made sure that he has the same active life every other 12 year old boy does. He’s super smart, is an excellent hockey player (once had a natural hat trick!) and is the only kid I know that can pull off orange converse sneakers with pink laces. He’s fun to hang out with and he understands what Cure CMD means to him. He’s also a celebrity at Flyers games and lets his Aunt Heather tag along to meet all the players at the yearly Flyers carnival.

I’m honored to be his friend and to have an opportunity to raise money for a wonderful cause.

Bonnie

I am a runner who has run only a few races here and there in the past 15 years. I had decided to train for a half marathon this year and the NJ Marathon presented itself! I am running and fundraising in honor of my nephew, Liam, who has Ullrich’s Muscular Dystrophy, which is a form of a congenital muscular dystrophy. Liam is someone who lives his life enthusiastically and with good humor. He doesn’t complain about what he doesn’t have – he makes the best of what he has. He has many friends because of his personality and is a good role model even for those of us many years older than he! I am happy to do what I can to try to fund the work of Cure CMD, to give Liam and other individuals with this condition the best medical treatments available, and to hopefully find a cure for future generations.

Susan and Alex

I have never participated in a marathon before and didn’t think that a 13-mile walk was in my future, but it is now. Sixteen years after giving birth to Alex, I remain inspired by his undaunted spirit in the face of tremendous challenges. Alex has CMD of unknown subtype. It took ten years of searching to find that diagnosis and we need more information in order to help him toward a healthy future. Cure CMD has changed our lives and given us a direction; the hope that through the expansion of awareness and the support of scientific research we will one day find meaningful treatments and a deeper understanding of this life-altering disease.

My name is Alex. I am 16 years old. I have congenital muscular dystrophy (CMD) and am deaf. As a deaf person, I use sign language to communicate. I also use a power wheelchair because I can’t stand and walk due to CMD. I am “rolling” at the Long Branch ½ Marathon to support Cure CMD because the group has given me hope that they will find a cure. I also want to help everybody understand that people with disabilities aren’t worth less than anyone else. I want to prove that we all can communicate, feel, think, understand, and achieve goals.

Greg and Alex

I am participating in the New Jersey ½ Marathon to assist Alex as he rolls on that day. Alex, who has CMD of un-diagnosed type, is the light of my life and my best buddy in the whole world. He is bright and brave and brilliant and funny, and although he uses a wheelchair, he places few limits on himself and what he believes he can achieve. I’m also participating because I believe that Cure CMD and its supporters at Children’s Hospital of Philadelphia, the NIH, and at hospital and university clinics, and laboratories around the world are our best hope for finding a treatment for Alex.

Lara & daughter, Melissa

I am running the marathon to give Susan and Alex hope. I am running for a mother’s love. No matter how hard it gets, no matter how tired you are, you never give up. You never lose hope. Never.

Susan and Becky

I am walking because I love Alex and want to help raise money to fund research to help him and others with MD. I’m very glad to be a part of this along with my husband Gary and Alex’s parents Susan and Greg.

Gary

Why am I running? I hate running. I love biking, swimming, hiking, and walking. But, ever since I started running cross-country 40 years ago, I haven’t especially enjoyed running. Yet, I’ve continued to run: year after year, for no apparent reason. Now I know why. I am running for Alex, Liam, Ruthie, Sam, Jake, Sydney, Maia, and all those other kids whose CMD keeps them from running. Finding a cure takes research, and research is like building a home or a skyscraper, or creating a sculpture or a dance. It sometimes seems as if it will never be finished. But with patience, perseverance, skill, and resources, one day we’ll all be able to stand back and be amazed at a new creation. I am running to raise the resources to help in the creation of the cure for CMD.

Jennifer with her friend Charly

I am running because I need it for my sanity and because my heart goes out to those fighting the disease and their loved ones. I am thankful to have this opportunity to help raise funds for research and finding new treatments.

Mari and Ruthie

I’m doing the half marathon for my daughter, Ruthie. Ruthie has Bethlem-Ullrich Myopathy and can’t run, jump, or ride a bike; she climbs stairs with difficulty; and she needs a stroller for distances of more than a few blocks. And yet Ruthie throws herself into every experience and every activity. She is always first in line at gym class, she plays at playgrounds, and she loves swimming. She understands that there are some things she can’t do, but she doesn’t let it stop her. Once, after a race in preschool, Ruthie’s friend told her that if she didn’t run faster she’d never win any races. Ruthie paused for a moment and then said, “I know that, but I’m great at obstacle courses!” I’m inspired every day by Ruthie’s courage, confidence, and zest, and I know that, with your help, we will find a cure for CMDs! Thank you for supporting us.

Tracy and Sam

My son Sam is my love, my life and my inspiration. When he was diagnosed with Congenital Muscular Dystrophy my world fell apart – my hopes and dreams lay shattered. I vowed to my little boy that I would do everything humanly possible to help find a cure for this terrible disease and to give him the hope of a future free from pain and suffering – a chance of having a normal life. So far we have raised an amazing £150,000 (approx $200,000) towards making the hope of a cure a little closer. Donate in dollars here or in sterling via http://www.justgiving.com/RunforSAM2010/. Many thanks, Tracy & Sam xx

Jennifer and Jake

I’m running for the most, amazing, most determined little boy I’ve ever met. My son’s name is Jake and he has Congenital Muscular Dystrophy. He’s been through more in his little life then any adult that I’ve ever known. On a daily basis I watch Jake struggle to do the things most of us take for granted. Sitting up doesn’t come easy and standing is even more of a challenge for him. He falls a lot but every time his body fails him and he falls over, he gets right back up with a smile. His determination is well beyond incredible. When I became a mom I promised that there would never be anything in the world that I wouldn’t do to help Jake. Cure CMD has provided me with this great opportunity to not only help Jake but to show that his determination is contagious to most everyone he meets.

Tina

I am running for my great friend Jennifer and her beautiful son Jake. Jen is giving, thoughtful, loving, kind, generous and dedicates her life to making sure Jake has the best care possible. She is determined to help him reach goals only she believes possible. She wants nothing more than to find a cure for CMD, not only to help Jake, but to help everyone living with CMD. I am running to help her and all of you make this possible.

Scott

My little cousin, Jake, has CMD. His Mother, Jennifer, has been most unselfish in the care of Jake and has asked me to support her in the NJ half Marathon. I felt that simply walking/running with her would not be sufficient support so I decided to “Join The Team” to raise the $500, and hopefully much more. Jake has suffered multiple surgeries, therapy sessions and countless visits to various specialists that would surely defeat most children. He has an unwavering spirit and a beautiful, determined and supportive family who has cared for his every need since his premature birth. I have two children, one of which is Jake’s age, and I cannot imagine the pain involved in seeing your child suffer on a regular basis. I will raise as much money as I can to show my support for Jen, for Jake and for all the other children out there who have his condition.

Cecilia and Sydney

I’m running for Sydney, and for other children with muscle disease. Sydney has a congenital muscle disease or myopathy (CM). Her CM type is undetermined, but clinically it resembles Bethlem Myopathy. Since infancy, Sydney has generally shown slow and inconsistent improvement over time, with therapy and age. Sometimes her muscle testing suggests some of her muscles have gotten stronger, while others have weakened a little; and sometimes she has gotten stronger, but in certain areas has not kept up with an age appropriate rate of improvement necessary to support her growing body. We are focusing our efforts with Sydney on maintaining and improving strength and endurance, while avoiding muscle damage. Cure CMD supports research to identify new genes that may help diagnosis Sydney, and other children; the first step towards treatment and a cure. Please support me to raise money for Cure CMD.

Jeffrey with son, Colin

I am running this race for my brother-in-law Doug, his daughter Sydney, and Sydney’s brothers, Sam and Jesse. You see, Cecilia’s family is concerned that she might get lost during the race and I have promised to run with her to ensure she makes it to the finish line! I am also excited and proud to raise money for Cure CMD in hope that one day Sydney and others like her can be properly diagnosed, treated and cured.

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Esteban

Esteban

My niece is Sydney . I am running because I want to help my family raise money and awareness for children with congenital muscle disease or myopathy. I have never run for a charity before and I think this is a great cause. I am also running because I have a goal to run four half marathons this year. I ran two half marathons last year for the first time and decided to try to run four this year. I ran in high school and have started running again in the last 5 years. This event allows me to help my family and my niece while at the same time come one step closer to achieving a personal goal.

Pete and Melissa

We are doing the ½ marathon for our friends, and their daughter Sydney. She is our daughter Cori’s best friend. They have played together since they were babies. We have watched Sydney grow into an extraordinary young girl; she faces all of her challenges with courage, insight, and sweetness. Also, her family’s amazing love and support for Sydney as well as their other children is an inspiration!

Dan

My niece is Sydney. I am running because I have always run. I have been running since high school and after twenty three years in the Army, I have a few miles behind me. The last time I ran a half marathon was in college and since 1998, I have been satisfied with the annual Army 10 Miler. I was not able to participate last year because on August 2nd 2008, I had a heart attack while running and went into arrest. I was a lucky man. My guardian angel, in the form of a fellow runner, gave me CPR and the great heroes of Arlington County Fire Department revived me. Two stints and a month later, I was able to start running again and on October 4th 2009 ran the Army 10 Miler; 1 hour 26 minutes 24 seconds. When my sister, Cecilia, said she was going to run to support Cure CMD, I realized in all my miles, I had never run a charity event. So here I am. This is a great cause and I hope I can garner your support in preparation for this run.

Anne and Maia

My daughter, Maia has CMD. I run because my daughter, Maia cannot run. I run for Maia. Maia in turn teaches me to slow down, sit down and listen. I am running to find and fund a drug to slow disease progression. Maia has become weaker each year until we started prednisone. Prednisone is a temporary reprieve from the inevitable downhill course of her progressive neuromuscular disase called CMD.

Joe and Maia

I am running for my daughter Maia because Maia can’t run. Her disease doesn’t allow it. It also doesn’t allow her to grow up like other girls and boys. She can’t talk and she tires easily yet she still is a remarkable and beautiful person. At times I am incredibly sad but everything must have a starting point and working toward drug therapies for Congenital Muscular Dystrophy is my starting point. Hopefully these therapies will be able to help Maia and other people with CMD. Please help donate whatever you can. Thanks.

Paul and Sylvia

We are running just for fun and it feels so good to show off next day in the office. This time we are running especially for Maia, Paul’s grand daughter.

Kit and Philipp

We are running to help raise funds for Cure CMD in support of their mission to raise awareness and seek a cure and treatment for people with CMD. Maia is our inspiration!