Deciding to Start a Charity is a Tough Decision
I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some involuntary movement.
The MRI did not look right to the neurosurgeon that looked at the image but he did not have any reason to be completely alarmed as she had no symptoms and the area he was looking at was an area he did not feel he could do much to improve anyway. We made a few more visits at 6-month intervals and did nothing but watch.
As a few more years passed we noticed some slight hearing loss ( from school tests) and at that time we got the diagnosis of Superficial Siderosis when we discussed it with our neurosurgeon. From that point on the research began and was the beginning of the Superficial Siderosis Research Alliance (SSRA) that was recently created.
That’s was back near 2012 and we are almost to 2020 right now so this was not a quick decision. At that time our daughter also had brain surgery to correct the leak and open-heart surgery to correct a congenital heart defect. We call her a miracle and if you met her on the street you would not even know this as she is as normal as a young teenager as you will find.
This has been a very difficult decision to make because our daughter does not want attention because of her condition. She has hearing loss but for now, has no other symptoms and her hearing loss according to her is not “that bad”. The audiologists and others say it is worse than she admits but we take her word for it. As we meet others with this condition, it is obvious the devastation this disease can cause in people’s lives. So we are not at that stage and do not want to think about that every day either, but it is tough knowing others are going through that as well.
So we decided to start a 501(c)(3) organization to support medical research. Our son died in the car accident that I mentioned above, so this “cause” has already taken a life and now it is causing another medical problem several years later. The car accident was in 2008 and we are almost 12 years later and still dealing with ramifications we did not know about then other than we already lost a child at that time. That was a devastating experience and one that words cannot describe.
So with this background information, I hope we can partner together and form a true alliance for medical research for superficial siderosis. This will not be easy.
Right now we have no celebrity backing, no big-dollar contributors, but we have all of us.
In the coming months, we will communicate how we need volunteers to help raise money. We expect that we all share the fundraising burden by either finding unique ways to individually raise money or partner with others you may have met on this website or elsewhere. There are no easy answers and it will require work. No amount of money is too small to get this project going. We are returning the money to medical research and holding back all expenses for now as best as possible until we get started. All charities started somewhere, The American Cancer Society, The American Heart Association…..there are many to name here but they all started somewhere with very little money.
Let’s be the giant of rare disease. It will not be easy but next time you look at the website think about how we can all be the Alliance and do our part to find more treatment options and a possible cure someday for this neurodegenerative disease superficial siderosis. Look at your network of people, some are just waiting for someone to ask how they can help. Try that today and the coming months as we get this Alliance moving.
What are our goals? Well, each individual can set their goals — raise $50, raise $1,000….but please do something for our alliance whether it be volunteering time or talent. This is a lifetime commitment as well, we need to be consistent and tireless in our alliance as this does not go away tomorrow. Together we can achieve our goals and because of what I discussed above I feel we all have a good reason to do this as I am sure many of the stories each person can share are equally as moving and touching.
Thanks for reading, we look forward to success in our Alliance ( SSRA) and hearing from more people. If you have not contacted us in the past, please do so now and share your story and goals with us.
We need everyone! We need family members of those that have Superficial Siderosis to help! Caregivers, Children, Parents, Friends, Siblings, Cousins you name it…..
Founder – SSRA 2019