National MPS Society
I have been actively involved with the MPS Society since 2007. I serve on the Board of Directors with my personal mission to eliminate the challenges of MPS. We have hosted several fundraisers and donated 100% of funds raised to Morquio syndrome research.
The society is a well respected 501(c)3 charity that focuses on:
Funding innovative research
Patient driven Advocacy
Family support programs
I joined the society specifically for their transparency and proven track record of success.
Annabelle started enzyme replacement therapy in September of 2011 at the age of 5. She particiapted in the BioMarin Pivotal clinical trial. Since starting ERT, Annabelle's stamina and endurance has significantly improved and she has maintained her level of independence. Annabelle is now 8 years old and doing great.
Dr. William Mackenzie, Orthopedic Surgeon
1600 Rockland Road
Wilmington, DE 19803
For Appointments: (302) 651-5916
For Information: (302) 651-4181
Dr Mackenzie had been Annabelle's doctor since she was just 8 months old. We choose Dr Mackenzie because of his expertise and experience with Morquio patients. He has seen more patients with morquio than any doctor in the world. We also have found the anesthesia team to be top notch and also very experienced.
Artwork by Annabelle
Interactive website to learn the facts about Morquio and connect globally with other Morquio families.
Rare Disease Legislative Advocates
Rare Disease Legislative Advocates (RDLA) is a collaborative organization designed to support the advocacy of all rare disease groups. Our goal is to empower the patient to become an advocate! By growing the patient advocacy community & working collectively we can amplify our many voices to ensure rare disease patients are heard in State & Federal Government.
Lift Me Up! Therapeutic Riding Program
Great Falls, VA
Lift Me Up! is a therapeutic horseback riding program dedicated to providing safe and effective instruction for children and adults who have varying disabilities.
Annabelle riding Mirabelle April 2016