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Had Anyone Ever Had A "benefit/fundraiser" Type Thing Done For Them????


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Well, up until April 28th I would say "NO!" but my sister, brother and other family and MANY friends started planning this and I just found out a few weeks ago. Our area does a lot of this sort of thing, so it's not unusual but I just feel awkward, embarrassed and a little uncomfortable. I am VERY humbled, grateful and overwhelmed at the interest and people who are willing to help. People from so many "segments" of my life: family, church, work, prior work, hospital, hockey parents (boys play hockey), all the schools (we have kids in elem, middle school and high school) I teach a Marriage Enrichment class and many past students have come together... And others I'm sure I'm forgetting.

My situation is definitely inconvenient and being bed-bound with all of the head trauma is a pain, and I'm glad that I'm getting SOME publicity in our little town to P.O.T.S, Autoimmune Mediated Autonomic Dysfunction Neuropathy and the many things that come along with it- I'm just thinking I don't every remember seeing a benefit for someone who isn't terminally ill or has a well known debilitating disease.

I'm just nervous as can be!!!!! If anyone has good information that would be helpful for me to pass out, let me know. I really want the primary benefit of the benefit is people learning! I'm also going to be on a TV segment the next week- so same goes for that! I have a little bit of time. No do I use my time the best????

Anyway- if anyone has had one of these done- advice????? If you haven't- advice???? I'm just a nervous wreck about it. I hope I don't sound ungracious- I am SO not- quite the opposite. I can't believe SO many people care at all!!!!!!!



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i am fortunate enough to say my friends did this for me. they raised about $1,000 for me. all i could do was hope i deserved it. i used to be a musician, so the music community came together and threw a local concert for me. i don't remember trying to educate people about dysautonomia though because i wasn't as educated at that time.

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Hi Jen, in advance of meeting with the reporter send them a link to this sight and have them watch the changes video that was produced here. It is the second one pinned at the top of the forum. You might want to add that many things can cause orthostatic intolerance, including some serious illnesses which they are still trying to figure out for you and then how to treat it.

I'm sure most of us here would feel self conscious and embarassed to have the attention that a fundraiser brings, especially when we are used to doing for others. It seems though you have a tremendous amount of love being sent your way, we don't always know how much people truly care for us until something like this happens. What a gift to know how much you are loved and how much people want to help you. They all want to feel that they are doing something to help, so let them feel good that they could in some small way give back to you.

Also this is a wonderful opportunity as you said to educate, utilize that to the best of your ability, your story may help someone else get to the right care. Being able to help others get to the right doctors and right cares is what has helped me feel a bit better about being sick. It creates compassion and empathy for others, I may not have had, had this not been my path.

Best to you, take care and hope it all goes well.

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