Crossing Oceans for a Cure Report (Michigan USA)

“Crossing Oceans for a Cure” benefit weekend saw families from Italy, America Venezuela, Canada and New Zealand present. Our speakers came from Australia, Belgium, Germany and America.

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Photos: 1. Ashton Keddy I-Cell  2.  David Sillence,  Autumn Tobey and Kelly Crompton 3. Sergio and Maria Elena Cardenas  4. Zack Hagget, Andre Daniels, John Haggett, Marjory and Luis Catozzi  (Click on any photo to see a larger copy)

On behalf of ISMRD, I want to thank the Australian MPS Society for their very generous support of Prof David Sillence.

Our conference was a huge success with 31 families attending, but for the first time ever in the History of Lysosomal diseases I am very proud to announce that we had 28 ML2 and ML3 families joining together on mass, with 3 families with Mannosidosis also present. We also had several families with MPS joining us and giving us their support.

For many of the ML families this was their first time in attending a conference of this nature and the first time they had ever met another ML family, and some of our families were newly diagnosed.. This meeting has seen the beginning of many friendships being made and much sharing of information. There were a lot of tears and much laughter. The isolation for ML families has finally been broken.

Our Drs did an incredible job. Prof Sillence arrived on Wednesday evening and spent all day Thursday seeing families and their children before making two presentations on Friday. Once again I saw him going far beyond the call of duty. I must also acknowledge the work of Drs LeRoy and Patterson. Many families commented on how accessible they were. These 3 men did an incredible job in seeing that each and every family went home with more information than they came with, and of course I cannot forget Stephan Tiede from Germany, and his work on Gene Mutations in ML, and the information and hope he has given all families with ML.

The feed back from the families has been absolutely incredible some of the comments are as follows.

  • I came with little knowledge and now have left with a lot, and most of all new friends
  • The sharing of information and being part of a big family has been fantastic
  • The speakers were outstanding and having the opportunity to speak one on one was incredible. They gave of their time so willingly
  • This was by far the most informative and useful conference I have ever been to.

Saturday 24th April saw the families heading off to ISMRD’s first ever major fundraiser. The day was cold in fact it started to snow, so there were very few walkers but people turned up just to register, pick up their tee shirts and leave their donations. How incredibly poignant that Penguins is our logo. The penguins had gathered in Michigan to raise funds for research only to have it snow.

If I was to pick one special moment in the whole weekend it would have to be all about the children. Seeing all our young ladies together just talking like normal girls was very special. Many of them are on Pamidronate and hearing them share how this drug has help them bought tears to my eyes. They were also very informative to other young ladies who have not yet started treatment. Some very special connections have been made with this group.

Language was no barrier for the children. Seeing Zack Haggett from America and Sergio Cardenas from Venezuela playing together are memories we will never forget.

The whole weekend has created many special moments for all the ML families, but I think for our Drs seeing so many ML children and young adults all together for the first time was an incredibly defining moment.

Stephan Tiede from Germany stated that we would continue in his work on Gene Mutations. Seeing all the children together made it all seem so real. He said he would no longer see the samples he works with as just samples.

ISMRD are unreadily grateful for the support given to this benefit weekend by the Australian MPS Society. It has given us the opportunity to raise awareness for these super orphan diseases and to raise much needed funds for research.

Jenny Noble

Board Member ISMRD,

The International Advocate for Glycoprotein Storage Disease

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