National MPS Society names interim CEO

Terri Klein, National MPS Society’s director of development and operations, has assumed the title of interim CEO. Terri’s long history with the National MPS Society and her dedication to funding MPS and ML research make her the ideal choice to assume the president’s responsibilities. The National MPS Society board of directors expresses gratitude to outgoing … Continued

Society joins Sanfilippo foundations to support gene therapy development

Abeona Therapeutics Inc., a leading clinical-stage biopharmaceutical company focused on developing novel gene and cell therapies for life-threatening rare diseases, announced today a collaborative agreement between nine Sanfilippo foundations to provide approximately $13.85 million of grants to Abeona in installments for the advancement of the Company’s clinical stage gene therapies for Sanfilippo Syndrome Type A … Continued

Join the board of directors

Each year the National MPS Society holds an election for board of director positions due to expire at the end of that year. You must be a current member of the National MPS Society, 21 years of age and a U.S. resident. Employees, officials, agents or representatives of companies engaged in the business of development … Continued

Foundation offers assistance for Hunter Syndrome medical expenses

We know that medical expenses are always a headache, so we are excited to share some good news on the health care front for children and adults with MPS II! A charitable foundation, the Assistance Fund, added Hunter Syndrome to its list of covered diseases and established the Hunter Syndrome Financial Assistance Program. The foundation … Continued

Lysogene establishes MPS III parent advisory board

Lysogene MPS IIIA parent advisory board holds inuagural meeting. Each member is a parent of a child with #Sanfilippo and will help the company establish realistic expectations for therapies, hear about clinical trial design and recruitment effort and reiterate the importance of addressing the cognitive problems of those affected by MPS IIIA. “Lysogene is dedicated … Continued

Sister bond inspires giving

Dear Friends, We ask that you join our family and support the National MPS Society by donating to the 2017 Annual Fund. The Society provides a sense of community and advocates tirelessly to improve the lives of families affected by MPS and ML. Karina is 25 years old, a milestone because she has MPS IIIA. … Continued

TheeDesign Launched Our New WordPress Website

COMPANY is proud to announce that our newly redesigned website has launched. Our new site was built by Raleigh web design and internet marketing company, TheeDesign, in WordPress. WordPress is an easy-to-use content management system that makes it easy for our team to manage and update our website by ourselves. We have implemented an interactive … Continued