A message from Sabrina. Please read it and please do what you can to help us.
I don't think it's just patients and parents of patients who embrace the effects & benefits of Myozyme but likely it's those we surround ourselves with as well. It takes just a few minutes for someone to draft a letter and I think the response could have a profound effect on the powers that be who don't see the need for this life saving drug. I would greatly appreciate your consideration. Please let me know of anyone else you guys know who blogs. I also have requests in for AMDA & UPF. Sabrina Friends in the pompe community, As most of you know, New Zealand is currently not on board with funding Myozyme even though more than 45 other countries see the benefit of doing so. There are at least 5 patients in New Zealand currently suffering from this progressive muscle wasting disease. Monique Griffin, a fellow pompe patient, has been asked by Lysosomal Diseases New Zealand to join them in their fighton Tuesday with Pharmac (the Pharmaceutical Management Agency of New Zealand). Whether she is talking directly to Pharmac or being interviewed by media, she is front & center in a major struggle that stands to benefit so many people. Monique will be flying out on Saturday with this huge undertaking and we, as a community, can help. For those of you who know Monique, she is a walking testimonial and a compelling public speaker but lets give her even more ammunition for this very important meeting.
Please take a moment and write a brief story of what Myozyme has meant to you or what is has done for a beloved member of your family. It's best if your story is kept short so that it'll be read. Imagine if Monique waves in her hands hundreds of letters, photos, results and testimonials of patients who suffer from pompe disease who have benefited in some way from receiving Myozyme infusions. There is great power in numbers, please take a moment to give voice to your story for our fellow pompe sufferers in New Zealand.
Please send your story THIS WEEKEND to Monique Griffin at firstname.lastname@example.org.
Thank you in advance for your support! Sabrina Low-DuMond Mom to Zack (16) pompe, Madison (14) unaffected, Kyle (28) unaffected So Cal.