…PM EST/EDT (USA) of the due date. If a due date falls on a USA federal holiday or a Saturday or Sunday, the due date will shift to the next business day. The Society Research Portal should be open three weeks before a LOI due date. Funding Mechanisms and Levels Research Tier I Grant Research will address complex or multidisciplinary questions and/or unmet needs in basic, translational, clinical, or diagnostic aspects of the MPS and ML disorders Up to a total of $100,000 US, disbursed over one to two years…
…safe- simply click the “Donate Online” button in the upper right to donate. Make sure to bookmark this page and come back often to check on my progress! More updates at isaiah43.weebly.com! The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases. Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit www.mpssociety.org for more information. 10 MPS II…
Mucopolysaccharidoses are genetic diseases affecting 1 in 25,000 children. MPS and related diseases affect virtually every organ and body system including joints, nerves and muscles. This is due to incompletely broken down glycosaminoglycan (GAG) that remains stored inside the cells in the body and begins to build up, causing progressive damage and, for many, significant pain. Individuals with MPS may present with symptoms of pain not unlike those with other degenerative diseases, including arthritis. This pain may occur from nerve pain stemming from neurologic involvement and neuropathic signals arising in…
Shop the RARE Aware Store For logo items, we invite you to visit the RARE Aware Shop, created and managed by the Adult Resource Committee. Proceeds from these sales support adults diagnosed with MPS or ML. Shop Now 1 Our Mission The National MPS Society exists to cure, support and advocate for MPS and ML….
CountyOrganization NameContact Australia Lysosomal Diseases Australia john.hopwood@adelaide.edu.au France Vaincre les Maladies Lysosomales Phone: 01 69 75 40 30 New Zealand Lysosomal Diseases New Zealand john.forman@xtra.co.nz Norway Lysosomal Diseases Norway Phone: 64 85 60 00 info@frambu.no Romania Fundatia Romana Pentru Bolile Lizozomale gaucher.romania@yahoo.com United States International Society for Mannosidosis & Related Diseases info@mannosidosis.org United States National Tay-Sachs & Allied Diseases Association info@ntsad.org…
…treated or not treated with cochlear implant (102.10 or 102.11 for children) Applicants with MPS or ML also are eligible for an expedited application process called compassionate allowances, which seeks to pay benefits to those with very severe and obvious disabilities. Compassionate allowances enable individuals to qualify based on minimal medical evidence. The Application Process The application can be completed online or with a representative from the SSA. Applications for children must be completed in person and can’t be submitted online, however an adult can choose either method. http://www.disability-benefits-help.org/content/application-process Before…
…NBS! Every fourth Wednesday of the Month at 1:00pm EST: National MPS Society’s Advocacy Committee Meeting – Email info@mpssociety.org to receive the Zoom login information for this monthly meeting! May 15: Speakers’ Bureau Virtual Capitol Hill Meetings – Advocates from across the country will meet with law and policy-makers in Washington D.C. Napa Race for a Cure Sunday, April 28th 8:30 – 12:00 EDT Register Online Keller’s 5k for MPS Saturday, May 04th 7:00 – 12:00 EDT Register Online Million Dollar Bike Ride Saturday, June 08th Register Online Long…
…sleep and how I witnessed his one and only seizure a few weeks prior around his bedtime. He immediately ordered up for an EEG and we had that scheduled as soon as possible. After the EEG was over, the tech said to me, “…if doctor thinks it’s emergent to call you, then he will call you today or tomorrow. Otherwise, he will give you a call in 3-4 days.” I took that as a sign… The nurse called me the very next day. She said they suspected epilepsy and we…
KARINA’S BIRTHDAY FUNDRAISER! Karina was diagnosed with Sanfilippo syndrome (MPS IIIA) when she was five years old. Sanfilippo is a neurological storage disorder causing progressive damage to the body. As a toddler, she loved to run, sing and play. As the disease has progressed, it has caused her to lose the ability to walk, talk and eat by mouth. Yet, she courageously fights the disease and shows all those around her what unconditional love really means. Sanfilippo is a terminal disorder, many do not live past their teenage years. She…
Link to purchase disposable swim diapers from My Pool Pal www.mypoolpal.com Link to Duraline Medical Products for specialty undergarments www.arktherapeutic.com Link to Adaptive Mall.com, a resource for medical equipment southpawenterprises.com Vehicle Conversion…
