I need some help and am hoping I can get some advice from fellow riders. I am in the process of starting a Foundation in honor of my daughters memory. We need fundraisers.Could any of you lead me in the right direction as to who I should contact to discuss a Fundraising event? I have Disabling Familia Hemiplegic Migraines (FHM). This is a rare form of a Complex/Complicated Migraine. It is a Neurological Disease. We all knew my brain didn't work like a normal persons, so no shock there! Anyway, ALL of my many symptoms are a cause from this disease. There is a very extensive list and I am happy I have not ...experienced them all. There are still some things I don't know the answer to. I don't know if I may develop some of these other symptoms, like temporary partial paralysis or blindness. Scary stuff right? There is no cure but there are some medications that may help some of my symptoms. Over the last year I have been given 2 of the medications they use and had no relief. BUT, there are others out there that may. I am hopeful that there will be a combination that can get me back to a some what normal life. Do you remember me mentioning brain fog? That is one of my symptoms I have most days. Some worse then others. My short term memory isn't very good. I can't remember words. I say the wrong words, I reverse words in sentences and also vowels in words. My diagnosis was found out by Dr Dollar (ha) asking the right questions. She also researched what happened to Bailey then requested a family history of Headaches. Lets just say WOW. I will start with my daughter,Bailey. We lost her in 2004 and the medical world was baffled as o what appned to her. We now have a very answer to the cause. The medical Docs thought it was CNS Vasculites, Pathology said NOPE. What we know now is she had Migraine Infarction's (strokes) which caused her brain to swell ending with brain death. That is VERY rare. A few years after Bailey died Caty started having headaches and auditory hallucinations. She heard 'staticky' voices but could not understand what they were saying. Headaches turned into migraines. Many tests and specialists later, she was diagnosed with AIWS (Alice in Wonderland Syndrome) It is also a form of FHM. Once I told my Mom about this...what do you know? In her adolescence she had AIWS. Hers were visual. JT (my brother)went through a period from his teens until his mid 30's with possible AIWS symptoms. About 2 years ago my sister Stacy was diagnosed with Atypical Migraines (complicated/Complex) Dylan (my son)has Temporal Lobe Seizures, another symptom. I also recently found out my Great Uncle also had horrible headaches. It's in our genes. It is a mutates chromosome. All my family (living) seems to have outgrown there symptoms. Mine wont ever go away. There is to much damage allready done to be reversed. That is why I now have to seek medicinal therapies to try and ease some of my symptoms. Until that combination is found my Dr recommended I start taking magnesium and 2 herbal medications that may help some. So, here we go again Shannon. Another new beginning. This time I have a better support system. This time it will be easier. This time...It will be a fight for my Bailey.

 

What exactly are you trying to accomplish ?
Be a little more specific.

 

Guess that wasn't very specific, sorry. I am petty new at all of these. There is a foundation called Hemiplegic Migraine Foundation. It is very small since the disease is so rare. We need to create fundraisers to get donations to help with research into the disease and ways to help treat it, Hopefully find a cure or a way to stop it from progressing. There is now a branch named Bailey Elizabeth Research fund. I know that a lot of you guys have charity events and rides to help different groups and foundations. I would like to be able to sit in on a scheduled meeting or have a private sit down with the captains of some of the local clubs so I can explain a little more about the disease, what happened to my daughter and our urgent need for funding. There is a FB page named Hemiplegic Migraine Foundation and also a website, www.hemiplegicmigrainfoundation that talks a little more about it. I know some of you may think it makes no sense for someone that suffers from migraines would want to be surrounded by Harleys! Not all of us are triggered by noise ( I am lucky there) Mainly I need contacts to the right groups that would be willing to listen to me and consider helping support Bailey's memory. Because her illness was unknown, we were unable to donate her organs, As her mother, I feel I am being a second chance to honor her. I also have a page on FB named Temporarily Out of Order. In the notes section I wrote about her story , what happened, basically a mothers view point of watching her daughter suffer and pass away in 10 short days.

 

Welcome to the HD Forums from Texas. TLDR.

 

Visit the local HD dealer and ask when the next HOG meeting. Go and introduce yourself. You'll find many fine, friendly folks looking for a way to help the community. You may be surprised.

 

Welcome from Jacksonville, Florida!

 

Welcome from the Sunshine State and good luck.

 

I am already aware of the many fine folks! Part of why I came here. Thank you so much! Appreciate your help!

 

Welcome!

 

If I were in your shoes, I would contact Johns Hopkins, Mass General, Mayo Clinic and some other top research hospitals and discuss the issue.
They are always looking at new issues they wish to explore.
I know this for a fact.