golfinFF
Active member
Some who have met me or seen some of my posts around the forum know I am heavily involved with a charity and I was told to post about it by a member.
The charity I am involved with is Help Extinguish Hunter Syndrome whose mission is to raise awareness about Hunter Syndrome(MPS II or Mucopolysacchridosis Type II), give aide to families in need and fund research for a cure. How do we go about accomplishing our mission statement, by holding fundraisers(5K's, golf outings, T-shirt sales, wine tastings, etc.) these not only create dollars but spread the word about the disease and how it affects the roughly 500 people and their families, the dollars we generate are distributed to families in need through grants, we are also always staying on top of where research is going and who is doing it. One big thing about those who are involved with us is we all have some attachment to the disease wether it's family or friends who deal with it. None of us get compensation for our work and we all put money into events and research as we believe what we are doing.
What is Hunter Syndrome? The short answer is a genetic disorder that affects roughly 500 people in the US. The disorder affects the whole body and has no cure at this time, receives no federal funding(orphan disease), and is a life limiting disorder for those who are diagnosed with it. Everyone who has Hunter Syndrome has physical effects from the disorder and some also have mental effects as well.
Treatment- While there is no cure there is a weekly medication infusion that many who are diagnosed receive that is a replacement for the enzyme they are missing, some do this at home while others do this at the hospital. While this infusion does help slow the physical affects of the disorder down it is not a cure. This weekly treatment that last 5-6 hrs for most will continue for the rest of their lives unless a cure is found. There is still hope and research going on for a cure and gene therapy is the major focus at this time.
Funding for Research- Since the disorder has less than 1,000 cases it does not see any federal dollars for research. This means that all the money comes from corporate/private donations and charities.
We do have some events coming up in the next month to month and a half that are listed on out web site.
In that year he and his family truly became part of my family. The hours spent working on fundraisers, time spent at the hospital while their son was having surgery or getting infusions brought us close. Even though they did not need the financial assistance they wanted to continue what we had started and expand it.
That expansion was a huge step as that meant starting a non-profit. That decision was made in the fall of 2009 and after months of hard work and late nights we were approved as a 501(c)(3). Through the whole process of establishing the 501(c)(3) I worked with the attorneys to make sure the paper work was filled out properly for the state, and IRS. This was no easy task as by-laws had to be written as well as a mission statement and approved by myself and two others who part of the original board then by state and federal agencies.
Since the beginning I have served as the Treasurer and combined that for a while with secretary. I have served as the point of contact for almost every event that we have held and come event day I get dubbed as the coordinator. It is all a lot of work but is truly worth every bit of time and effort.
Thank You for taking the time to read my long post but wanted to get this out there since it such a rare disorder and not many have heard of it.
The charity I am involved with is Help Extinguish Hunter Syndrome whose mission is to raise awareness about Hunter Syndrome(MPS II or Mucopolysacchridosis Type II), give aide to families in need and fund research for a cure. How do we go about accomplishing our mission statement, by holding fundraisers(5K's, golf outings, T-shirt sales, wine tastings, etc.) these not only create dollars but spread the word about the disease and how it affects the roughly 500 people and their families, the dollars we generate are distributed to families in need through grants, we are also always staying on top of where research is going and who is doing it. One big thing about those who are involved with us is we all have some attachment to the disease wether it's family or friends who deal with it. None of us get compensation for our work and we all put money into events and research as we believe what we are doing.
What is Hunter Syndrome? The short answer is a genetic disorder that affects roughly 500 people in the US. The disorder affects the whole body and has no cure at this time, receives no federal funding(orphan disease), and is a life limiting disorder for those who are diagnosed with it. Everyone who has Hunter Syndrome has physical effects from the disorder and some also have mental effects as well.
Treatment- While there is no cure there is a weekly medication infusion that many who are diagnosed receive that is a replacement for the enzyme they are missing, some do this at home while others do this at the hospital. While this infusion does help slow the physical affects of the disorder down it is not a cure. This weekly treatment that last 5-6 hrs for most will continue for the rest of their lives unless a cure is found. There is still hope and research going on for a cure and gene therapy is the major focus at this time.
Funding for Research- Since the disorder has less than 1,000 cases it does not see any federal dollars for research. This means that all the money comes from corporate/private donations and charities.
We do have some events coming up in the next month to month and a half that are listed on out web site.
May 15th and is National MPS Day so wear your purple.
How I got involved-
A coworker's son was diagnosed in 2008 and when he told us what the disorder was and the costs associated with it, I knew I had to help the family. So what did I do I sat around the dinner table at the firehouse with the guys many nights into the wee hours of the night with pads of paper and drinking pots of coffee. After several nights we developed a plan to raise some money to help the family get through the financial hardship they were about to encounter. We made it through the first year of fundraising and were able to help them out financially and with medical waivers further assistance wasn't necessary. How I got involved-
In that year he and his family truly became part of my family. The hours spent working on fundraisers, time spent at the hospital while their son was having surgery or getting infusions brought us close. Even though they did not need the financial assistance they wanted to continue what we had started and expand it.
That expansion was a huge step as that meant starting a non-profit. That decision was made in the fall of 2009 and after months of hard work and late nights we were approved as a 501(c)(3). Through the whole process of establishing the 501(c)(3) I worked with the attorneys to make sure the paper work was filled out properly for the state, and IRS. This was no easy task as by-laws had to be written as well as a mission statement and approved by myself and two others who part of the original board then by state and federal agencies.
Since the beginning I have served as the Treasurer and combined that for a while with secretary. I have served as the point of contact for almost every event that we have held and come event day I get dubbed as the coordinator. It is all a lot of work but is truly worth every bit of time and effort.
Thank You for taking the time to read my long post but wanted to get this out there since it such a rare disorder and not many have heard of it.
