You are invited to join us in Bethesda, Maryland for our 37th Annual Family Conference! Located just outside of Washington, D.C., this conference will feature a day of science and advocacy sessions as we meet with the FDA and NIH, and a second day with family conference sessions, care management tracks, and a SPIRIT conference for our adults with MPS or ML (ages 18+). Make plans to come to Maryland on September 28-30th to be a part of the event!
This conference will take place at the Hyatt Regency Bethesda Hotel. For more information and to register, please click here.
Our Connected Together conference will begin on Thursday, September 28 with dinner and breakout sessions. Science and advocacy sessions on Friday will bring you directly into conversations with policymakers and those making decisions about clinical studies and treatments. Adults with MPS or ML will enjoy time together on Saturday, learning about topics they have requested, as families join for sessions relevant to their needs.
We will offer scholarships for families to attend the conference, and for adults to participate in the SPIRIT conference. Click here for scholarship information. All applications must be completed online by July 17, 2023. Scholarships are limited, and prioritized for those who have not been to a conference in person before. Anyone planning to attend should book their rooms early to ensure a space in the block, which provides the best rate per night until it sells out.
Following the conference, we will hold our popular Speakers’ Bureau program in Washington, D.C.! Members interested in attending will be trained in how to share their stories, updated on legislation relevant to the MPS and ML community, and go to Congress to meet face-to-face in meetings on Monday, October 2. The Speakers’ Bureau program offers scholarships to participants. To register for more information and indicate your plans to attend Advocacy Day, click here.
In recognition of International MPS Awareness Day, it is an honor to share Harboring Hope, a short film telling the stories of some of the greatest challenges and areas of unmet need in our community, especially in areas where there are no approved treatment options (mucolipidosis and Sanfilippo syndrome) and where there are significant gaps (such as with our adults diagnosed with MPS or ML).
We must reach to find answers for those without treatment options and continue to advocate for the next generations. Harboring Hope is a video produced by Dan Salvo of Forge Biologics, telling the stories of Lauryn Brown (mother of Blakely, ML II), Carl Kapes (father of Ryan and Brayden, MPS IIIA), and Sheri Wise (MPS IVA). Their words reveal areas for continued work as they speak of overcoming obstacles and finding hope.
Dear Friends,
We cordially invite you to attend the National MPS Society’s Maritime Gala in Tiburon, California on Saturday, May 13. This evening recognizes and honors those with MPS or ML as we celebrate International MPS Awareness Day. We will raise funds for research and family support programs and spend time together on the San Francisco Bay at the Corinthian Yacht Club.
Born of the belief that today’s generation can find tomorrow’s cure, the National MPS Society finds, funds, and partners with people and programs that improve the lives of those suffering from rare progressive diseases and conducts the groundbreaking research necessary to improve their odds.
The evening begins with a VIP guest blue carpet arrival at 6:00 p.m., with other attendees joining at 7:00 p.m. to kick off the night’s events. Tickets include open bar, heavy hors d’oeuvres, delicious desserts, live and silent auctions, and a ragtime and swing live music spectacular. Those unable to join us in person can participate in the auctions remotely, and we encourage you to consider donating to the event or providing a contribution to the auction.
We hope you will share tributes to your heroes by purchasing an ad in our program book, a hero board, or a Gala sponsorship and receive recognition accompanying each sponsorship level.
Join us as we gather as a community to celebrate and make a difference.
Sincerely,
National MPS Society
Each year we remember individuals with MPS or ML who have passed away but remain in our thoughts and hearts. We invite families and loved ones to share their memories with others.
Through the Angels Among Us publication, we encourage you to join in community to lift up, remember, and honor their lives as you read their names and reflect upon their memories.
This publication is available in a smaller format (standard resolution) for faster download or high resolution for those who want to print a copy.
Angels Among Us: Standard Resolution
Angels Among Us: High Resolution
On April 30th, in Napa, CA, we will host the MPS Napa Race for a Cure. Come out and enjoy a family day with a chance to win some fantastic items! The family day will include face painting, a photo booth, caricature artist and more! Click here to register
January 25, 2023 – The National MPS Society welcomes Wendy Spaulding as our new Director of Development of Major Gifts and Planned Giving. Wendy has over 20 years of executive and comprehensive fundraising experience. Along with her B.S and MBA in Management, she received her Non-Profit Management Certification from Duke University and is scheduled to complete the Accelerated Management Program from Yale University School of Management in 2024. Wendy has three children, Christopher, Jordan, and Kayla and has 4 grandchildren. She shares:
‘Giving back and helping others is my life’s work and it is my passion.’ People say that all the time, but due to my own upbringing and the mere fact that I’ve been afforded and blessed with so many opportunities, I always said if I ever found myself in a position to give back, I would. It is so serendipitous because while I’m asking donors to fulfill their philanthropic goals, my fundraising efforts allow me to fulfill mine. Many thanks to NC State University for giving the fundamentals of fundraising in Planned Giving through Major Gifts in addition to being a part of their first $1 Billion Achieve Capital Campaign. I carried this development structure of excellence NC State gave me throughout my career. Furthermore, many thanks to North Carolina Central University where I served in the Biomedical-Biotechnology Research Institute, as this exposure has prepared me for my current role with the National MPS Society.
Being here, in this space and at this time is phenomenal, especially as the pharmaceutical industry and industry partners (geneticists, researchers, etc.) are continuously producing extraordinary and exceptional breakthroughs. With that said, this opportunity to serve as the Society’s first director in this role was a ‘no brainer.’ This is where I belong, in this arena, forging and creating additional successes for the Society while assisting as many as we can. What a gift! Lastly, but most importantly, I will always uphold the mission of the National MPS Society as we continue our existence to cure, support, and advocate for MPS and ML.
We are honored to welcome Wendy Spaulding into this role at the Society, bringing us to a new milestone for development and advancement for the organization. For more information, please visit mpssociety.org.
Terri L. Klein, MPA
President and CEO
The Annual Fund sustains our organization and allows for us to fulfill our mission. We ask you to join us in making a contribution to strengthen our work and impact the future for those with MPS and ML. Please take a moment to listen to the message below from our Annual Fund Chair and the Director of Family Support & Communication, Leslie Urdaneta.
You can help us change lives. Donations of any size make a difference. We are grateful for your support. Make a gift today!
Big Bake for MPS and ML now through November 13th!
Join us whether you are a professional baker or a professional faker, we need you!
There are many ways to participate, here are a few ideas to get you started:
Don’t forget to share your recipes, pictures and videos with us. You can upload them here or email them to Tracy Kirby at tracy@mpssociety.org.
Click here to read more
Matthew Ellinwood, Chief Scientific Officer, authored a new publication published in the American Journal of Medical Genetics outlining newborn screening and suggested improvements based on the National MPS Society’s work in this area. The full text of the article can be found here.
We continue to recognize the babies diagnosed with MPS shortly after birth throughout the month of September, and are honored to release this publication in conjunction with Newborn Screening Awareness Month.
Click here to download full text.
Durham, NC
August 3, 2022 – The National MPS Society announces that Xavier Becerra, the Secretary of the Department of Health and Human Services (DHHS) has approved adding MPS II as a condition to the recommended uniform screening panel (RUSP) for newborns. This long-awaited acceptance follows the Advisory Committee on Heritable Disorders in Newborns and Children’s (ACHDNC) approval to move the nomination forward to DHHS after a considerable evidence review. Becerra stated:
“After considering the utility of current screening technologies, treatment for MPS II, and the impact on public health systems, I accept the Committee’s recommendation to expand the Recommended Uniform Screening Panel to include the addition of MPS II.”
Conditions listed on the RUSP are provided to individual states as a recommendation for adoption for newborn screening.
This nomination, led by National MPS Society President/CEO Terri Klein and Chief Scientific Officer Matthew Ellinwood, was the product of years of work and collaboration, publications, and a community with a purpose. Klein shares:
“This is a momentous occasion for the MPS II Patient Community. Today, we can begin identifying newborns with MPS II, Hunter Syndrome. I am grateful to DHHS for expanding the RUSP and recognize this will improve the lives of newborns and infants across our country.
Screening newborns for MPS II will provide equitable access to immediate, life-saving therapies. Equitable access will provide testing to everyone, including traditionally under-served communities. Since enzyme replacement therapy (ERT) has been available for our boys, we have witnessed increased quality and length of life and an opportunity for young men to thrive in the world.
Now, early access will erase many of the debilitating manifestations of this disease. Newborns treated with ERT will have access to eventual therapies that address cognitive decline that are being developed and in clinical trials today.”
We would like to extend thanks to the ACHDNC for their newborn screening review. We also recognize and appreciate the families and individuals with MPS II who shared their stories and experiences and the thousands of signatories who contributed to the letter of support provided to the ACHDNC.
MPS II is the second MPS disorder to be included on the RUSP. MPS I was added by DHHS in 2016. Today, 30 states screen for MPS I. Our efforts to add newborn screening for all MPS diseases remain at the forefront of our work. With MPS I and MPS II now on the RUSP, the Society will submit a request for MPS VII, Sly Syndrome, in the coming months. We are investigating paths forward to present requests for MPS III, IVA, and VI and continue to prioritize this work, recognizing this as an effort that supports preservation of physical and cognitive functioning for babies diagnosed and directly saves lives.
To access the letter from the Department of Health and Human Services, please click here.
