MPS II FUND

08 May 2015
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Run For a Cure – Training Run For Deb

Sticky Post By On 8 May, 2015

This long run is for you Deb, and for you, Trey. 16K is a long training run, but thinking of your family and thinking of the journey we’ve been on together got me through it all. Our kids were diagnosed at the same time, and you were the first family we met after that diagnosis took us down paths we never knew we would take. I’ve watched you worry over Trey, cope with horrific news, and then fight like hell to change the world for him.

And you have. And I couldn’t be more proud to know you; I couldn’t be more proud to have you on our team, side by side.

Much like our battle with MPS, my run today felt like every step was uphill. It felt like I would never make it to the end. But also like MPS, I know we’re near the top of that hill, and the run back down toward the finish line will be easier and faster. We’ll get to that finish line for our kids. We’ll get there soon, and we’ll get there together.

Thanks for continuing to inspire us. Send my love to your family.

If anyone out there would like to support our Run – our Hope for a cure – please click through and spare what you can.
http://www.gifttool.com/athon/MyFundraisingPage…

05 May 2015
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Run For a Cure – For Jack Higginson

Sticky Post By On 5 May, 2015

This warm-up run is dedicated to Jack Higginson, a sweet little boy battling MPS II. This run was a little longer, and a bit more difficult. But thinking of the pain and heartbreak Jack and his family suffer through day in and day out as they battle this disease gave me the motivation to keep going and finish strong.
Families dealing with the diagnosis of MPS II have the double agony of diagnosis coupled with the excruciating wait until age 6 or 7, an age where they will know whether their child is battling cognitive impairment as a result of the disease. 

MPS is a tough battle, and the strength, courage, and determination it takes to battle through a diagnosis of Hunter Syndrome is something that only the strongest people can undertake. Jack’s family have been incredible advocates and fighters for our kids – the strongest people I know. They are kind, caring, and compassionate, and will be a big reason why we find a cure for Hunter Syndrome! This one was for you, Jack. And for you lovely Higginsons! See you on race day!

14 Jun 2014
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2014 Research Grant Award Recipients

Sticky Post By On 14 June, 2014

Research Logo

RESEARCH GRANTS ANNOUNCED!

We are thrilled to announce that The Isaac Foundation has granted $200,000 in research grants to 3 innovative projects aimed at finding a cure for MPS!

We are proud to award $100,000 to Dr. Alberto Auricchio in Italy for his incredibly exciting work on Gene Therapy. We hope to see this work head to clinical trials in early 2015!

We are also very excited to award 2 $50,000 research grants from the MPS II FUND, under the leadership of Deb Purcell! The recipients of these awards are granted to Dr. Scott McIvor at the University of Minnesota for his work entitled “AAV Mediated IDS Gene Transfer for MPS II” and to Dr. Brian Bigger at the University of Manchester for his work “Evaluating Stem Cell Gene Therapy for Treating the Brain in MPS II”

This brings the total awarded over the past 6 months to $250,000 – all in hopes of finding a cure for our children.We look forward to seeing results from this research and will continue our work raising money to support these projects and more during the course of the next few years.

Thank you for your incredible support. None of this can happen without you.