National MPS Society Advocacy
Christine Tippett, Chair, Advocacy Committee
National MPS Society Board of Directors
The National MPS Society’s Advocacy Committee has monthly calls. There are over 25 members and they work in areas of newborn screening, appropriations language, legislative action alerts to members, COVID task force and partner with Everylife Foundation and the RDLA. In 2020, the Newborn Screening Saves Lives Act, follow-up with Deferred Action Visa platform, and submitting the MPS II RUSP nomination were key milestones.
With the Speaker’s Bureau, the National MPS Society stormed Capitol Hill on rare disease week with over 48 advocates and took 76 meetings with key legislators. This is a capstone program at the Society and each year we are seeking additional advocates to join the cause. The Society offers training, webinars, and one-to-one chats with the CEO to help families build their stories to raise awareness.
Throughout the year, the Advocacy Committee will attend key meetings that include NORD and Global Genes. In addition, the Society has become a RareHub partner at the Everylife Foundation in Washington D.C.
Fundraising in a Virtual Conference
Larry Kirch, Fundraising Chair
National MPS Society Board of Directors
The Fundraising presentation shared that in-person fundraising collapsed because of the pandemic this year. They worked hard to move towards virtual events and found success! From the Raleigh Run for Rare, Virtual Yacht Party, and virtual Million Dollar Bike Ride, donors came through. 2020 will be a year with fewer revenue streams due to the events not reaching their potential, but families and donors around the country have helped the Society reach essential goals.
The Committee shared that the 2020 Annual Fund is underway with Co-Chairs Patricia Espinol and Matthew Ellinwood, DVM, PhD/CSO National MPS Society. In addition, The Big Bake, a national bake sale and bake off will kick off on October 30, 2020! There will be baking competitions for breads, cakes, cookies, and pies. They hope to see engagement from around the country. It does not matter if the event is large or small, as long as we all work together to help find cures for MPS and ML.
