RARE Champion of Hope – Advocacy

RARE Champion of Hope – Advocacy I want to congratulate Alison Rockett Frase for winning such a prestigious award for Advocacy from the Global Genes foundation, a group that has created the ‘Gold Standard’ for rare disease awareness across the globe. I do not brag well, but I must say that every word uttered is well deserved and earned through her tears, joy, pain and happiness over the last 2 decades. From the day our son Joshua was born, Alison did not accept the death sentence spoken over our son. Alison stated in her first conversation with Joshua’s first nurse in Medical City Hospital, Dallas TX…”LET’S GIVE HIM A CHANCE”…Alison was told a few hours after our son’s birth that he might not make it through the day…a short time later, they sent us home and said if he’s alive in a year, bring him back and we’ll re-evaluate him…by Joshua’s first birthday, Alison and I had co-founded The Joshua Frase Foundation for Congenital Myopathy Research, Inc. and Alison was busy organizing a world class group of scientists, and planning events for fundraising and raising awareness for this deadly disorder that takes the lives of most before their second birthday. I have frequently said that Alison’s chutzpah and resolve gained her passage through many encounters with doctors in hospitals that did not know how to care for these fragile kiddos…I must say at this point, that all of the mother’s of these kids learn to fight for their children’s lives, and it is amazing for us husbands to witness the fortitude and resolve it takes to move this life forward with MTM…so…I take a moment to congratulate all of the mothers, fathers, daughters who are carriers or not, grandparents, friends and family who have carried the torch for your loved ones through this tiresome journey. A few years before Joshua passed, Alison and I produced the last JFF promotional film, and in that film we said that selfishly, we hope we find a cure with in our Joshua’s lifetime, but if not, we would not stop until we found the answers… When Joshua passed 40 days shy of his 16th birthday, our world was shattered and shaken, but not broken. We live with faith, hope, and love. Faith that every decision made and every chess move taken was done for our children, and faith that no matter what, things would work for good. Hope that we could make a difference in the lives of our MTM children and their families lives as well, and experience a love that surpasses all understanding. These children teach us how to love unconditionally. This award is given for Advocacy, advocacy for the patients, the parents, the extended families, the scientists, and everyone who is affected by this disorder. I personally see this award given to my wife for the countless times I would come home from work, or awaken in the night to hear Alison weeping, sometimes uncontrollably…one time speaking with a mom or dad from Australia, or maybe England, or Texas, or Canada…I can not name them all, but they have spanned the continents, and I will tell you that each time one of these conversations takes place, whether a child is being life-flighted, or in the NIC unit fighting for their lives, Alison would dry the tears, stand up, and with more resolve than I could imagine, get ready to fight the next battle against this disorder. I congratulate my wife for her efforts and accomplishments. I congratulate her and the scientific team as well as every advocate for MTM for getting this science to clinical (hopefully soon). I congratulate Alison and all of the MTM families out there fighting for their children. And, as Alison and I always say…ALWAYS FOR THE CHILDREN… Best, Paul Frase Press Release from Global Genes Global Genes Announces Fourth Annual RARE Tribute to Champions of Hope Award Recipients ALISO VIEJO, Calif. — July 14, 2015 — Global Genes™ is pleased to announce the award recipients that will be recognized and honored at the 4th Annual RARE Tribute to Champions of Hope on September 26, 2015, at the Hyatt Regency Huntington Beach Resort and Spa in Huntington Beach, CA. The annual blue carpet event brings together scientists, advocates, patients and supporters who are leading the efforts in the fight against rare disease. Over 300 individuals and organizations worldwide were nominated by their peers for a RARE Champion of Hope award for their notable efforts in rare disease advocacy, science, collaborative sciences, medical care and treatment. From the extraordinary list of nominees, members from the Global Genes Board of Directors, Medical and Science Advisory Board, and other key partners, selected the recipients to be honored at the 4th annual Tribute event. To read the press release in its entirety, click here To make sure that you receive our current newsletters, please add alison@joshuafrase.org to your contacts