Help us Raise $45,000 for International MPS Awareness Day!
Join the National MPS Society as we approach International MPS Awareness Day – May 15, 2020. This year, as we celebrate 45 years of serving families, we hope to raise $45,000 in 45 days for our Family Support programs. These programs provide access to critical resources for those with MPS and ML. Programs include assistance for durable medical equipment, medical travel assistance, continuing education scholarships, conference scholarships, bereavement and more. During uncertain times, organizations like ours experience negative financial impacts. Part of our core mission is to support families. Please help us support our families in need by donating today. To make a contribution, click here: bit.ly/mpsday2020
Each week we’ll highlight these programs as well as families that have received them.
Program: Journey Assistance Program
Description: The National MPS Society’s Journey Assistance Program helps provide grants to purchase exceptional items needed during the MPS journey. These items have the potential to make life easier or more enjoyable for individuals living with MPS or ML. Typically, items funded by a Journey Grant have limited funding options and are an out-of-pocket expense for families. Journey Grants cover 40% of the item’s purchase price and do not exceed $500 per individual with MPS or ML.
Highlight: Jennifer, MPS I
The National MPS Society’s Journey Assistance Program helped to provide funding for Jennifer to receive a recliner chair for her weekly home infusions. “Each week Jennifer receives an infusion of medication that is medically necessary. A home healthcare nurse arrives and begins this six hour infusion during which Jennifer’s comfort is assured in a recliner type chair. The cushion on her previous chair was flattened so much that she could feel springs underneath her. This provided her with a new chair with an electric reclining feature.”
Program: Medical Travel Assistance Program
Description: The National MPS Society offers a Medical Travel Assistance Program for families needing to travel long distances to consult with medical professionals who are knowledgeable about MPS and ML. The Medical Travel Assistance Program (MTAP) helps fund out-of-town travel costs for non-recurring medical appointments that are 200 or more miles away from their home.
Highlight: Jason H., MPS I
“Jason was diagnosed with Hurler Syndrome at 9 months old, and had a bone marrow transplant at 11 months old. His sister, Kari, was 3 years old at the time and a perfect match for her brother. Jason is now 33 years old and has outlived his life expectancy. He holds a part time job, and lives on his own. He also had a driver’s license until he became legally blind. He has had both corneas replaced, but we now deal with the retina, which at this time there is nothing they can do for this. Jason has gone through numerous surgeries including both hips being replaced. We just deal with whatever comes up when it comes up and continue to thank God every day for the gift of life.” The Medical Travel Assistance Program enabled Jason’s family to attend appointments with specialists for his corneal concerns.
Highlight: Ian, MPS IVA
“Ian is 10 years old with MPS IVA. He recently traveled to Delaware for his 9th surgery to help to correct some of the deformity in his legs. This will hopefully allow him more independent mobility in the future.” The Medical Travel Assistance Program provided funding for Ian’s family to travel from Alabama to Delaware for this important surgery.
Highlight: Jason M., MPS II
“A few years ago I started to notice I was developing an issue with my vision and the formation of blind spots. I went to many local eye doctors and professionals who all had no idea why this was happening. My Neuro-ophthalmologist happened to find a journal article from a fellow Neuro-ophthalmologist in Boston describing the same issue in another MPS II adult, but my insurance would not cover the travel. The MPS Society assisted in covering these costs so I was able to be seen and to help furthering the understanding of this issue with hopes proper treatment will be found. So this help not only was beneficial to me, but to the MPS community as a whole.”
Program: Family Assistance Program
Description: The National MPS Society provides grants for special equipment or medical aids up to a maximum of $3,000 for parents of an individual with MPS or ML or an adult with MPS or ML. These grants are given to approved families once per 12-month period, dependent on available funds and committee approval.
Highlight: Justin, MPS II, Hearing Aids
“Justin has received a Family Assistance Grant for his much-needed hearing aids. Justin’s hearing aids help to improve social skills, especially with his peers. They enhance his receptive and expressive communication which allows him increased interaction with his friends, both typically-developing and those with special needs. This truly improves his quality of life!”
Highlight: Jerry, MPS I, eSight Magnification Glasses
“We are so grateful for the ongoing support and assistance provided by the National MPS Society. Last year, the Society assisted Jerry to purchase Medical-grade Magnifying glasses (eSight) to enhance his employment skills and assist him with seeing the world around him. Over the past few months, Jerry has had many ‘firsts,’ including seeing a Harry Potter Broadway Play, the Statue of Liberty, visiting his brother’s college campus (UNC), seeing the singers/Pastor at church, looking at Christmas lights, and other wonderful sights. We are so thankful to the Society for funding this device which has enriched and expanded his world.”
Nicholas, MPS IVA, Side Entry Wheelchair Ramp
“I’m Nick, a 40 year old husband, father and Morquio patient. I contacted the MPS Society about the Family Assistance Program because I previously owned a vehicle that I kept repairing until it was no longer feasible. I was forced to buy a used van and only with the help of this grant was able to add a wheelchair ramp. Now I can travel alone and during any weather. Thank you to the Family Assistance Program and to the National MPS Society. Thanks to you, myself and my family can GET-UP AND GO at any time.”
Program: Extraordinary Experiences
Description: The Extraordinary Experience program is designed especially for individuals diagnosed with MPS and ML who are 13 years of age and older. Grants of up to $1000 are available to help individuals have their very own life-enriching extraordinary experience.
Highlight: Holden, MPS VI, Specialized Driver’s Education Course
“With Holden’s unique characteristics we wanted to provide a more in-depth, one on one driver’s education program. Thanks to the MPS extraordinary experience he was able to get the extra help needed to make him an excellent driver! “
Highlight: James, MPS VI, Texas, National Student Leadership Council Trip
“The trip was fantastic! Thanks to the National MPS Society I was able to have fun while learning about the environment and leadership for a week at Yale University. It was an amazing experience that added to my life. Besides the course, I had the opportunity to visit the Beinecke Rare Book and Manuscript Library where I saw the Gutenberg Bible and the Yale University Art Gallery.”
Highlight: Jocelyn, MPS IVA, New Jersey, Taiwan MPS Conference
“Through the Extraordinary experiences program I was able to attend the Taiwan MPS Conference in 2013. At this trip I met with many representatives from Asian countries. It was emotional for me, as I talked with families from other countries struggling with their MPS diagnosis. Still, I was able to share my experience and remained optimistic amidst our cultural differences. The MPS community expands beyond the borders of the United States and I am happy to be part of the bridge in the Asian MPS rare disease community. So much has changed over the years with information available on the internet, but nothing compares to meeting families in person.”
Program: Continuing Education Scholarship
Description: Post-secondary education scholarships are available for individuals with MPS and ML, their siblings (under age 30), their children, and their parents. Scholarships are awarded in increments of $1,000 for full-time students, $500 for part-time students, and the Jeffrey Bardsley scholarship awards $5,000.
Highlight: Samantha, MPS I, Colorado
“When i applied to the University of Colorado-Denver, I was excited for the opportunities that were opened up to me. But, like most college students, I was unsure how I was going to afford it. Aside from tuition costs, books and parking costs were expensive. I applied and was fortunate to receive a scholarship from the National MPS Society. To some, this scholarship may just be considered a way to lessen the financial burdens, but I think for us with MPS/ML is it more than that. It’s access to our future careers, it relieves some of the emotional and physical inaccessibilities of college. But most importantly, it’s the National MPS Society’s way of saying we believe in you and your future. Without the support of our community and generous donations, these opportunities would not be available to us. Thank you to anyone who has donated to the family support programs, you’re making a difference in all of our lives.”
Highlight: Autumn, MPS VI, Oregon
“When I was attending college, I was a recipient of the Continuing Education Scholarship, which helped me pay for my textbooks each year until I graduated in 2017!”