It should come as no surprise that I am about to write this. I told you a long time ago that I chose the charity that I support – the Charcot Marie Tooth Association – after deliberation, research and discussion with its staff. I decided in 2009 that I needed to become an advocate for a cure for CMT – the nerve disease that impacts 1 in 2500 people, including myself, my family, and so many others.
This past weekend I was so fortunate to be able to attend the CMTA conference – the volunteer workshops as well as the patient-family conference where the medical professionals spoke.
It was transformational for me. And a complete affirmation of my choice to fully put my weight behind the CMTA.
Do you know that the CMTA has been the driving force in forming the international consortium for medical professionals who practice and research into all aspects of CMT?
Do you know that the CMTA is the driving force behind cutting edge research into finding a cure for CMT? Sure, you may not have today’s target type – CMT1A – but did you know huge strides are being made to line up the research required for funding for a cure for Type 2, and eventually as many of the 51 types of identified hereditary neuropathy as researchers can manage?
Do you know how close we are to a world without CMT? We are SO CLOSE. So close that we can almost smell success wafting across the world from the labs in Germany where compounds are being tested in animal models – compounds which have shown to diminish myelin protein production – compounds that may someday be used stop the damage to our nerves. We are so close that we need to start identifying people to participate in human drug trials.
We are so close that every time I see you supporting another organisation claiming to be the best hope for CMT I want to scream.
Because when you do that – when you throw your weight behind another charity – you kill a piece of hope. You distract focus from the only organisation that represents all of our best hope for a world without CMT.
We have a lot of work to do, as a community. We have to raise significant amounts of money to keep funding this research. To get drug trials off the ground. To bring in pharmaceutical partners to help us in the quest to end CMT.
So please. Considering the consequences of your actions, think about the distraction from the mission your action creates. Think twice.
Get involved. Email me. Reach out. Help. Support the CMTA.
Because divided we will fall.
And that thought – failing when we are so close – that makes me cry for us all.
Since the date of this original post back in November 2012, further edits have been made. Initially I had written that wearing the jersey of another organisation who claims to be the best of hope for CMT was a devisive action, one that made me want to cry (with rage I might add). I felt that those who wear another jersey should be aware of the choice they make and assess whether or not they are truly supporting an organisation that respresents the best hope for those of us with CMT, or if they are just making an easy choice based on being offered something for free. I edited this piece because my thinking has evolved. Now, I could care less what jersey people wear – after all it is just clothing, and hey, we all like free shirts. But I still passionately believe that the choice of what to wear needs to be made with full awareness of facts, and with full acknowledgement of the consequences. I know that the single focus charity organisation that represents the best hope for treatment for those of us with CMT is the CMTA. I also know that other organisations provide those of us with CMT tremendous support – from MDA clinics to CMTUK information packs, many charities support those of us with CMT in many different ways. Just choose your jersey wisely.
I received a message from a reader of the post asking me some good questions. As the reader did not choose to post publicly, I will extract and answer the various points below (and on my blog via comments).
Comment / Question received: “It seems that a rather serious issue makes you cry every time you see someone supporting another organization, but what is the issue? I think without that pertinent information, a lot of people who support both organizations will only be confused without information and just a bunch of emotions. If you’re going to discredit an organization, don’t do it halfway. Be courageous and tell the whole story. Commit to your cause wholeheartedly. If you have a real reason to cry, then the reasoning will be the only thing to get people to support the organization that you are supporting. Most of us who support either organization (many of us support both) have no idea that there is any sound reason not to support both. Please enlighten us.”
Answer: I did not say in my post not to support whichever CMT organisation you choose to support. I ask readers to think of the consequences of who they support, to think if they wish to distract focus, attention and funds, and then I ask readers to throw their weight behind the only organisation that is actively funding research into the cure, and invite emails and to have people join me in any way that they can.
Answer: With regard to the CMTA versus other organisations I will again go back and – rather than discredit another organisation – I will address what led me to choose to support the CMTA.
Answer: When choosing to support a charity, any charity, I do due diligence. One of the things I look for are recent accounts that tell me – as an investor in that charity – how the charity spends its money and what proportion goes to admin, to research, to office space. When I did my research I found accounts for the CMTA. The balance and split of funds that I saw (proportion to overhead versus research) made me feel okay about the charity. If you are interested in learning more about your charity, and how it spends its money, you can usually find this information on the charity’s website, in the corporate accounts filings (in the UK with Companies House, in the US with the state in which the charity is incorporated). I am a big believer in feeling comfortable with whomever I give my money to. And by the way, this is not to say that I don’t give money to people who don’t have accounts filed or who are not incorporated – I do, but when I do so I know that my investment may not be properly accounted for, I know the risk, and I take the decision with my eyes open.
Answer: Understanding how the money which is given to a charity is used is important to me, but also understanding who the charity supports with its funds is too. If a charity is providing patient support and information with the funds, I need to know that. Personally, I chose to give my time energy and effort to a charity that was recognised as supporting research into a cure, on multiple fronts. The CMTA has been behind from the start the formation of the consortia of international experts on CMT. They are familiar to and a link for medical professionals interested in CMT. The more networked professionals become, the easier it is for them to collaborate on finding a cure. In addition to building the networks, the CMTA also supports actionable targeted research aimed at finding drug based cures with its money. It has sponsored the creation of cell lines for high throughput drug testing at the NIH. It is supporting stem cell research (to enable the creation of nerve cells from skin cells) for the purpose of testing drugs identified as potential cures. It is sponsoring rat based model creation of CMT1A cell lines for testing of potential cures. And its efforts do not stop with CMT1A – the same is being done, targetting and filling in missing pieces of research to support the cure for other forms of CMT (the next target is the high throughput cell line for CMT2A). I decided to back the cure with my money – if you choose to back information or support with yours, just be comfortable that the organisation you support does provide those services, that their community is happy.
Answer: The opinion of my doctors mattered to me too. I specifically asked my doctors which CMT charities they had heard of. As a consequence, I actively advocate for the CMTA, and I also support the CMTUK with direct donations.
Answer: Why do I cry? I cry because I believe, in this small space, that every dollar that goes to one organisation supporting CMT can potentially take away from money going to support research into the cure. I believe – based on the information presented over the weekend – that human trials will be forthcoming, but to get to this point money, lots of money, is required. So I get passionate about directing money to the cure – that is what I have always been about. If your passion is about directing money to better information, or to patient support, then by all means – do that for your organisation. Just make sure you clearly tell your supporters that is what your chosen organisation is about. I always do that in the UK – I asked people here if they want to give to research or support (also if they want the tax relief to go the charity I promote a donation to CMTUK as CMTA is a US organisation).
And thank you for your patience in reading this. If you still think that I have not been clear enough, or that this is just about emotion without substance, let me know. I tend to write blog posts about how I feel, but I’m glad that the question enabled me to elaborate further!
LOVE IT I was just working on starting a blog for my area. You are a ROCK STAR keep going girl
I have continued to receive off blog message about this post. In the interest of transparency, I will continue to post extracts here, anonymised as much as possible.
Response: I am happy that you feel comfortable enough to send me a message about this. I am glad I prompt discussion, and I always welcome feedback. Thanks for reaching out to send to me yours.
I am comfortable enough with my own convictions and the track record out there – that there is only one organisation right now actually funding the targeted research into the building blocks for a cure – that I feel secure in blogging about my choice, my feelings, and I feel comfortable asking others to think twice when they choose which charity to support. I do not see my blog as a disservice, but a discussion. I’m sorry that you see it as a poor reflection on me, but I actually think the emotion I portray is exactly how I think and feel, which some people find helpful and many people relate to.
In my experience the fundraising of one organisation claiming to be in the same space as another hurts both – I’ve seen this personally and professionally – dividing the funds to be raised, dividing the opinion, dividing the message – it just doesn’t work or help in the long run. I believe that divided we will fall.
I appreciate CMT is hard. It is hard for the many people I met this past weekend, with varying degrees of impairment, in chairs, with bracing, with respiratory impairment. It is for all of them – as well as my family which is also impacted by CMT – that I will continue to promote supporting the organisation which directly finances research behind a cure.
As I said to others – if you choose to throw your weight behind another organisation, that is great. However, be transparent. Say that you support X organisation because they provide patient support, say you support the programmes of Y organisation because they help to defray the cost that individuals face. Whatever you do, do it with transparency, and after having done your own due diligence to ensure that whoever you give your funds to is well managing those.