Friday, February 17, 2012
by Mark Beckwith
As I was saying yesterday, we have our work cut out for us!
ICORD Board Member Jan Inge Henter suggested ICORD might meet adjacent to other professional meetings so there could be more cross-pollination – I’m wondering about trying to figure out how to make giant nevi the featured rare disease, and we could adjoin one of our Expert Meetings to ICORD.
L-R John Forman (New Zealand Organization for Rare Diseases), Mark Beckwith (Nevus Outreach), Steve Groft (NIH Office of Rare Disease Research), Mrs. Groft
L-R Vladimir Tomov (National Alliance of People with Rare Diseases, Bulgaria), Mark Beckwith (Nevus Outreach), Alexey Sokolov (Institute of Experimental Medicine of the Russian Academy of Medical Sciences)
In his introduction to the Japan Patient Association (JPA), Tateo Ito stressed “I feel it is important to step up exchange with … the US and to strengthen our alliances.” I was very pleased to hear this, since we are having a great challenge finding patients with giant nevi in Japan and the rest of Asia. Country after country (Taiwan, Korea, China) outlined their rare-disease history, activities and plans, and nowhere was there a trace of people with nevi. Compared to Asia, Europe was easy. More than ever, I believe we must figure out how to reach out to patients with nevi in Asia.
To our friends in Latin America, please note: we are so close to breaking the barriers! 40 Brazilians with nevi are now linked to Gramma Rosa’s Associação Nevo Portugal, and 26 Latin American families have registered in our registry. Do tell me, how shall we do this? What can we do to help?
In Canada, there is a group looking at creating “Nevus Outreach Canada.” I think this can make the nevus landscape in Canada as good as it can be. I heard recently that French-speaking Canadians have already started a sub-chapter of one of the French nevus associations.
Of course, we have wonderful inroads to Australia already – Nevus Support Australia being one of our very biggest and oldest allies. Networking together the New Zealanders should not be hard, except of course for numbers – there may not be a lot of people with giant nevi in New Zealand for the simple reason that there are not a lot of people in New Zealand, period. However, the Australian at ICORD, Hugh Dawkins from the Western Australia Department of Health, put it the very best: “People are the thing that we respond to.”
There was a presentation by another American patient association, the Friedreich’s Ataxia Research Alliance (FARA) – by their founder and president Ron Bartek. I was absolutely stunned by the parallels – how they started, what they have done, what they are doing and what they will do, all struck me as a blueprint for success for Nevus Outreach. As an example, they have 11 referral centers around the globe. We had already added this to our plan last May, but getting it done will be a challenge!
Stay tuned on that, but there is very little standing between us and equaling their track-record of funding $30 million in medical research. It’s only money, but it makes a difference. I think our nevus panorama will look quite different, and much better, after we pump some millions into it.
This was my second ICORD, but I realized something here for the first time: that the vast majority of the key players in the world Rare Diseases scene are the parent or grandparent of a child with one. Speaker after speaker here in Tokyo would begin or end their talk with a personal note about, or a photographic tribute to, the one for whom they were doing it, the one who had died, the one who had been cured, the one who spent years looking for a diagnosis or treatment. (I kept a tally and I concluded that for 80-90% of these speakers it is personal). “The greater good” is fine and all that, but when it comes to what motivates us to force action on the rest of the world, our fierce desire to do right by our children is what makes us into these unstoppable champions.
Let’s not forget that. If we don't do it, it won't get done. Bring on the challenges.