National MPS Society

A huge thank you to everyone who made the 3rd Annual Long Beach Race For Rare a terrific community event in support of our rare patient population! A special thank you to all our sponsors who made the event possible! Such a great morning with a beautiful run / walk by the Pacific Ocean, commarderie, music, face painting, donuts!, a time of reflection, courage awards, raffle drawings, medal ceremony, a sense of accomplishment and all by 11am! Thank you for making a difference, for spreading awareness and for raising dollars for a cause that matters. 10% of America has a rare disease so chances are this impacts you. There are ZERO cures for any rare disease. We are capable of doing so much more! Denali Therapeutics Ultragenyx Takeda BioMarin Pharmaceutical Inc. Banc of California Apella Wealth Protiviti Impactful Resources #BeFitModernPilates #RoyalBusinessBank #urquidez&associates, CPAs #OpenSesameRestaurant #BillyShoes National MPS Society #CuringRareDiseaseIsPossible #MichelleHopkinsRare #HaveHope #CureMPS #FeelingGrateful #FeelingInspired

What an honor to moderate a panel yesterday at Global Genes #WeekinRare with these experts Matthew Ellinwood Celia Goeldner and Pat Furlong about Biomarkers and Outcome Measures - our favorite subject COMBINEDBrain . Thank you Kristina Hone, MBA for the photo!

Do you want to work with an incredible team of colleagues with a mission? Do you want to help change the lives of individuals and families with MPS and ML II/III? Do you want to be a force of good in the world? If so, consider applying for the #CSO position at the National MPS Society, the oldest and largest #patientadvocacyorganization representing the MPS and ML II/III disorders. This position is written very broadly to ensure we have the best and most diverse application pool possible. Minimum requirements begin with an M.S. or equivalent academic training in a relevant area with relevant work experience. Remote/hybrid options available. Please check it out, and be in contact with any questions! https://lnkd.in/eUVBJ2AQ

When I arrived at the National MPS Society as CSO, I knew I was going to work for a great team. I’d already known the Society for two decades and served on their scientific advisory board for over 15 years. I didn’t hesitate when Terri L. Klein recruited me. I knew I would love the work, but what I was not prepared for was the wonderful new group of colleagues I would find both at the Society and among the families, advocates, clinicians, researchers, and NBS public health communities. It’s been a challenging and amazing time moving through COVID, the successful MPS II RUSP nomination, and the continued development of our grants program, including our new Challenge Grant Program, just to name a few milestones. With all this in mind, it’s with a full heart and no small saddness that I share that I will leave the Society as full time CSO this coming spring. I look forward to new efforts to help our communities in new ways. I encourage my network here to help us at the Society with recruitment to make sure we have an amazing new CSO. https://lnkd.in/e7rKjWpx

Over the last two years, I’ve found the American Society of Gene & Cell Therapy‘s Policy Summit to be one of the best meets of its kind. It’s definitely worth the early appointment with my alarm clock this morning to get to this meeting in DC. Check it out today. Virtual attendance is also an option!