There was a lot of thinking and deciding going into this... I guess I should add... I am the Chapter's leader. So each month I will host a support group meeting. Also as a leader I will help spread awareness to our medical community, and put ASAP events on to raise funds for research. Yes, its a lot... No, I have not forgotten about school... I will still be working on becoming a RN! To help understand why I did this, below is the letter I sent as a message to other chiarians in Oklahoma. I had let them all know what my plans were about a week ago.
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I first want to say, Thank You to everyone in this group. We all come from different walks of life, yet we can come together to support each other at our worst days. I sometimes rather talk to you all about what is going on with Kaylie, than my own friends or family… because you all get it. I have talked about how I feel about neurosurgeons/doctors… and that I feel… you have to find whats best for your family. Some of you also travel, and some stay in state, and I support everyone, no matter who you use. All though I have not had good treatments or appointments here at home… others of you have had the best here, but there is always room for improvement… with every doctor, nurse, or hospital. When I had so many problems I reached out to the three Big organizations… Conquer Chiari were the ones that told me about Stephanie, who she brought me to this group; they have also supported Kaylie, and her story by putting her as a Faces of Chiari child on their site. Chiari & Syringomyelia Foundation (CSF), all though I haven’t had personal contact with them, except for some of their doctors on their medical advisory board… they have such a great website full of information, and videos. American Syringomyelia & Chiari Alliance Project (ASAP) was the first organization I found when Kaylie was first dxed. Their members reached out to me, at my worst times.
When I was first added to the Oklahoma FB pages, Stephanie had talked to the OKC area about how we should start a support group. I know she knows this was something I was looking for, needed, and wanted to help start. Just at the time, it wasn’t good timing for me. I needed to focus on my daughter, and prepare my family for her surgery. Because the surgery was not a cure, and we now have to deal with my son, Mason… I want to make time for that support group. I love the fact about raising awareness, and fund raising for research…. But there were times I really needed doctors to listen to us, and that’s something hard to have when a support group doesn’t have a big organization backing them.
I have decided to start an ASAP Oklahoma Chapter. We will be nationally recognized. And the next time there is someone newly dxed, and they look at the big 3 organizations…. They will come across ASAP, and find that there are others in OK, and know there will be immediate support for them. I chose ASAP… for many reasons. First they are a strong organization, very well established, and have a very big medical advisory board that backs them. They also support; support groups. Meaning they help the group get info out to the medical community you live in, which is needed here. CSF does this too… in fact their medical advisory board pretty much consist of the same doctors… just maybe a couple different ones. But I know for a fact that all those doctors support both ASAP & CSF. My own neurosurgeon sits on CSF’s board, but also does ASAP’s conference every year. I think CC is great… but they don’t support support groups, and I don’t see them backed by a lot of big doctors. You can’t start a chapter with CC.
With starting a Chapter with ASAP, I had to sign Non-disclosure and Statement of Understanding forms. I first want to say Both ASAP & CSF makes you do this, and what that means is that; I as a leader of a chapter for ASAP, I can not fund raise for another Chiari non-profit/organization. I thought about this for a long time, talked to the group at the OKC meeting and many friends about this, had a lawyer look over the forms, and spoke to other friends that are involved in other big non-profits about it. But my deciding decision was when I saw Kaylie’s pedi the other day for a check up. We both had news to tell each other… She told me that she had just dxed another child with chiari, and since she couldn’t break Hippa laws, asked if she could give my information to the family. Of course I said yes! Then I talked to her about the chapter. She told me I would have more support, and willingness to learn more about Chiari from other doctors here, if I was backed by an organization that was backed by well-known doctors.
With this all said, I had already made plans to walk in Conquer Chiari walk, I have my family and friends joining me, because they know how important it is to me. I talked to ASAP’s board about it, and they understand I had already made commitments to CC to do that, and to the other Oklahoma Chiarians. So, I dated the papers Sept. 23rd, and ASAP will announce our Oklahoma Chapter after the walk.
When I signed those papers, it was only signing me as a leader, not those who decide they want to come to group meetings, or participate in ASAP events that I will put on. Just I can’t attend other Chiari non-profit events. But I fully support everyone else doing so. I wish the 3 groups could come together… but like all major illnesses; there will always be more than one non-profit for a condition. I hope my fellow Oklahomans support my decision.
Again, I hope this brings a lot more awareness to Oklahoma, and that many good things come from it!!! Our first ASAP support group meeting will be Oct. 20th at 11am at the Southwest Oklahoma City Public Library at 2201 SW 134th, Okc, Ok. The email for this Chapter is: firstname.lastname@example.org
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