Hunter Syndrome 01 May 2014 The Scotiabank 1/2 Marathon and 5K on June 22, 2014 Dear MPS II Research Fund Supporters, Happy Spring!! Thank you again, so so much for your support of our Hope, Sweat and Breathe Yoga Fundraiser on March 1. With donations… mcfadyena
Hunter Syndrome 03 Mar 2014 Hope, Sweat & Breathe: March 1, 2014 This picture was taken 10 years ago Saturday, on the day of Trey's birth. Wow. Saturday was a big day: Hope, Sweat & Breathe, our yoga fundraiser on Trey’s 10th… mcfadyena
Hunter Syndrome 23 Jan 2014 An Open Letter to Shire CEO Flemming Ornskov Before I get on with the letter that Jamie and Jason Fowler hand delivered to Flemming Ornskov at their brief meeting in Chicago last Saturday, January 18 (more can be… mcfadyena
Hunter Syndrome 19 Jan 2014 Hope, Sweat & Breathe- A Yoga Fundraiser for the MPS II Research Fund Details of Hope, Sweat & Breathe: Doors open at 12pm 12:30-1:15pm Vinyasa Yoga with Mike Nichols 1:30-2:15pm Vinyasa Yoga with Chris Duggan 2:30-3:15 Restorative Yoga with Lindsay Collins 3:30-4:15pm Family… mcfadyena
Hunter Syndrome 25 Dec 2013 Wishing for a Christmas Miracle When I watched this, I just kept thinking: 'This is a life. This is a life that could be saved.' No matter how different the MPS parent's life is from… mcfadyena
Hunter Syndrome 18 Dec 2013 Shire Willing to Let Jack Die Shire denied Jack life-saving treatment. They first said no last Thursday, at which point The Isaac Foundation implored them to reconsider. They said no again this past Monday. You can… mcfadyena
Hunter Syndrome 02 Dec 2013 Help us Save Jack's Life Jamie Fowler is one of my closest friends in the world. I feel her in my heart and my soul. I love her. Her partner is Jason and they have… mcfadyena
Hunter Syndrome 04 Nov 2013 An Open Letter to Parents of Typical Kids ‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’ If everyone walked the earth living by this quote, there would be no need for this… mcfadyena
Hunter Syndrome 25 Sep 2013 $110,000 Research Grant Funded! The Canadian MPS Society Board of Directors has supported our decision to fund a $110,000 research grant over two years to Dr. Douglas McCarty from Nationwide Children's Hospital in Columbus,… mcfadyena
Hunter Syndrome 24 Aug 2013 The Pot of Gold, Part Two: Compassionate Access There is NO question that intrathecal drug is working wonders for Trey. He is learning, he is happy, and he is living. In my previous blog post, I noted that criteria… mcfadyena