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Friday, March 7, 2014

Sheep Stealing


Team CMT at Bike New York

"Stop stealing sheep and find out how to do it yourself."- Urban Dictionary


My mom was a very religious and Godly woman. She believed in sharing her faith with others.  She loved to talk to total strangers about Jesus. She would go door to door witnessing. She thought I should do the same so she used to drag me to all sorts of seminars when I was a teenager to learn how to witness.

I hated it, because my talent and heart were not in that area.  I aways felt the way I lived my life was the most effective witness.

One thing I clearly remember was one of the teachers talking about "sheep stealing". "Sheep stealing" was when you persuaded someone in another church to join your own.  You were not supposed to "sheep steal" because you weaken another organization to build up your own. You weren't supposed to build up your organization at the expense of another. It was wrong and unethical and ultimately hurt the whole community.

The Urban Dictionary defines sheep stealing as: "Using other's ideas and knowledge instead of putting any effort into coming up with our own."

I never expected to encounter "sheep stealing" in the non profit world.  Yet I have experienced it for the last two years.

When I was diagnosed with CMT, I joined the CMTA. I raised money for them with a 1/2 marathon run.
I got the idea to start Team CMT when running a local race. I asked the CMTA to use their logo. It took months to get it to me. Let's just say they were not supportive.  One article in the CMTA newsletter was the extent of their support. I spent thousands of dollars of my own money to provide uniforms and publicity for the team. Not only that, but I endured meeting after CMTA support group meeting where the facilitators talked about exercise hurting CMT.

When the Hereditary Neuropathy Foundation offered financial support and help with publicity I was open to a partnership. What really sealed the deal is the HNF understood the power of exercise in stopping the progression of CMT.  Over and over again I heard at CMTA support meetings it was bad to exercise. The CMTA once told one of our early Team CMT members she could not start a team because people with CMT can't run.

What really brought me on board was the work the HNF support on exercise and CMT by Dr. Robert Chetlin.  HNF really understood the connection between exercise and living a full and healthy life with CMT. Here I found a true partner, not a reluctant participant.

Once I announced the partnership with HNF the President of the CMTA started a full blown assault to get me to dump the HNF. I had committed to the HNF and my word means something.  I planned on still working for the CMTA and HNF.  Actions taken since that time by the CMTA have made that impossible.

The CMTA chose to start their own team. The team was started by a former Team CMT member.  She took a shirt but only wore it once and never really participated in the team. So I was a bit surprised when she started a rival team. I know I take the spot light away from her. My team and I have gotten quite a lot of media attention. I won the National Championship in the Open Division at the Paratriathlon National Championship.  So starting a rival team may gives her the chance to be the face of the CMTA.

I had no problem with a rival team. I figured it was more opportunity to raise awareness of CMT. What started to happen next was where I have an issue.  Members of my team started to quit. I suspect they were contacted by CMTA leadership and volunteers.  The members who left my team all said the same thing. The CMTA is the best hope for a cure and I don't like any negativity.  Funny all the same things said to me by the CMTA president. I could not prove my members had been contacted until last week.  The HNF never once said anything negative about the CMTA, but I heard a lot of negativity about the HNF from the CMT Athletes founder and CMTA leadership.

Last week one of my new members was contacted by a CMTA employee, the Director of Volunteer Services. He has a blog and it clearly states my blog and HNF on his site. His name is on my Team CMT team page on my web site. He was made all kinds of promises to get him to jump to the CMTA. Just like the CMTA President made all kinds of promises to keep my team.  The CMTA crossed the line when they knew he was a Team CMT member and still pressed him to leave. I believe they have done this on numerous occasions.

CMTA members have also told athletes they cannot belong to both. I know because I was told by someone I tried to recruit. When I found out she was fundraising for the CMTA I wished her well and stopped recruiting.  I would never tell any of my team members they could not belong to the CMTA or raise funds for them. Yet that is what CMTA members do. I would not try and recruit members from their team. I would like them to extend the same courtesy.

The only request I make of Team CMT members is they not wear a Team CMT uniform when fundraising for the CMTA. In most cases we have paid for that uniform, so I think that is a fair request.

The founder of CMT Athletes has written in her blog that I and my Team CMT members stand in the way of a cure every time we put on the uniform.

So when I see one of my Team CMT members raising funds for the CMTA it is like someone hurt me. I know the things the CMTA has said about my team. I know the things they have done behind the scenes to undermine me, my team and the work of the HNF.  It is hard for me to see team members support the CMTA knowing what I know. Some things I just can't share with them.  I understand they have loved ones with CMT. They want a cure and I won't deny them every chance to find that cure despite my personal feelings. They have to do what they think is best for their family member.

This is what I would say to CMTA leader ship and to the founder of CMT Athletes. We are in the same fight. How do you know the HNF or the MDA is not right now funding the research that will lead to a cure? Why do you tell your members you are 3- 5 years from a cure?  It typically takes 7 years once clinical trials begin to get a drug to market. Since no drug is in clinical trials how can you make a promise of a cure? What is the reason other than it helps you to raise money? It is fundamentally dishonest to raise money this way. You give people false hope when you know it is not true. That is despicable.

How do you know a drug cure is the solution? Will the benefit of any drug developed outweigh the side effects? Will an average CMT patient be able to afford a drug cure?  Some MS medications cost $1800 a month. 

Why do you denigrate and try to interfere with the research into CMT and exercise? Why do you interfere with the best chance short term for stopping progression?. Kind of ironic that the CMTA promotes an athletic team while trying to stop research on CMT and exercise.

For awhile it was mildly amusing to watch the CMTA copy everything the HNF did. We had a team, the CMTA started a team. I saw CMT athletes use tag lines my publicist developed. One idea after another was copied. We have had cheer teams at the Richmond Marathon for years, the CMT athletes will have one in Austin.  I get we have no monopoly on these ideas. It is just comical they always seem to follow our lead. Do you ever have an original idea?

When you take members off my team, put out false statements, denigrate our research and try to block our work you hurt the entire community. You may just block the cure we need for ourselves and our family members. How dare you play that kind of game with people's lives.

Maybe the CMTA leadership and your volunteers need to take a long look at your behavior. Do you really have the best interests of the CMT community in mind or are your trying to protect your own six figure salary, power and position? Are you jealous about the success of Team CMTor the attention we have gotten? Is this just a game to you? Is it about crushing anyone that dares to be a rival?

Let me remind you of the struggle everyone of us faces with CMT.  There is room for all of us to do research, raise funds and raise awareness. Is the big CMTA so afraid of the little HNF that you work so hard to undermine us? Are you so lacking in your own ideas you must copy what we do? Is it so tough to find numbers you must recruit from the ranks of Team CMT?  Are you so lazy you can't recruit, that you just wait until somone joins Team CMT to take them for yours?

I realize this may do no good. In fact I may be putting a stick into a hornet's next. The philosophy of the HNF leadership has been to quietly endure the behavior of the CMTA. There is so much more that has gone on. Things much worse than I have describe here.  I am writing about the things I have experienced personally. I do this of my own volition.

Martin Luther King once said. "Our lives begin to end the day we become silent about things that matter."

This matters to me. Finding a cure matters.  Doing it in an ethical way matters. Not blocking the work of organizations that may hold the key to treatments and a cure matters. How you treat others engaged in this work matters. It matters when you try to tear apart my team and the organizations I partner with to build up your own.

Even though I am small I was never bullied in school because I stood up for myself when anyone tried it. I find most bullies are actually cowards. They run when you stand up to them or when you expose their behavior. It is time to stop being silent, to do so makes me an accomplice. This is too important. It affects the lives of everyone working to raise awareness of CMT and funds for CMT research. It affects those desperately waiting for treatments and a cure.

Maybe you have good intentions and have gotten carried away with besting a rival. I'm rooting for the CMTA. You have good programs. Your support groups are needed.You do good work. Show the same respect for Team CMT. Show the same respect for the MDA and the HNF.

It is time for a course correction. It is never too late to change behavior and do the right thing. It is time to look at the HNF and the MDA as partners in the fight against CMT.   Imagine what we could do if you worked with us instead of against us.

*************************
Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a two time participant of the Boston Marathon.  She was the 2012 National Champion Paratriathlon Open Division. In 2013 she qualified as a member of the Team USA Duathlon Team. She will compete in 2014 at the Age Group World Duathlon Sprint Championship in Pontevedre Spain.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 143 members in 28 states. We also have members in Australia, Canada, Vietnam, Turkey, Finland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/




4 comments:

  1. Excellent blog you’ve got here. It’s difficult to find high-quality writing like yours nowadays. I really appreciate individuals like you! Take care!! You can visit my site.
    Starting out in triathlons

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  2. Thank you for helping to find a cure for CMT. As for myself, I am 58 and was very active up intil 3 years ago. I have had some falls, fractured and surgery. I had physical therapy for 2 plus years and unfortnately it did more damage and didn't stop the progression. I still try to remain active, I use a walker and can only walk short distances, so I make sure I do laps around my house several times a day. I lift lightweights and do what I can. I have knees that buckle and has been the culprit in my many falls. I was diagnosed with CMT at age 9. I could no longer run and kept tripping over my feet, that was why I was brought to Dr,s. The fact that you can run is a Blessings Chris, it means your CMT not as severe. MDA spends all the research money on finding a cure for life threatening diseases associated with MD. Unfortunately CMT has never been considered as life threatening so research for a cure from the MDA is not a priority. The truth is CMT can be life threatening with development of breathing problems. I have now been chosen to be one of those statistics. I agree that CMTA has been saying they are close to a cure for years, back in the 90's they were saying so. I applaud your efforts in staying active, for being a pokes person and raising awareness. In getting back to your roots, it doesn't matter who, what or how a cure is found as it will be God who will design it. He gives power to the weak. I believe if all those who are effected with CMT either physically or as a family member prayed dilegently for a cure, we would move mountains. So let's pray and work together on finding that cure. God's Blessings on you Chris.

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  3. There is no definitive answer whether or not there is a certain type of exercise for people who are dealing with Charcot Marie Tooth disease. Although low-load exercises and physical therapy help quite a lot, people react to CMT differently, so its best to consult with a physician before doing specific exercises. After that, let your body do the talking. Listen to it and exercise to the extent that it can take. :)

    Agnes Lawson @ MedWell, LLC

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  4. Agnes that is good advice for anyone looking to exercise and there is evidence that exercise is helpful. Dr. Chetlin has shown those with CMT can build strength with weight training and using an exercise cycle.

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