Wednesday, November 1, 2017

Intense pride

When I gave it a moments thought I concluded that throughout my adult life I rise to middle management in most organizations I was involved with. In college I managed the student center then I graduated and became a Dean of Students. I am vice president of both my co-op board and my running club. So it just made sense that I became a local organizer of the foundation of the rare disease that I've been living with.

For the past year and a half I have been the person of contact and the liaison to the foundation for the GBS – CIDP foundation. That means if a  Brooklynite goes to the GBS – CIDP website and registers as a patient or caregiver and indicates they want to be contacted by someone in their local community, I contact them. I also organize meetings of people afflicted with our lovely syndrome.

This past weekend I attended a training for people in my volunteer position. The formal part of the training only gave me a little new information. It really confirmed that I've been reaching out to my contacts correctly and holding my meetings the way the foundation wants me to. And it also gave me a chance to spend time with people who been through what I've been through. And that's really the whole point of the foundation. Meeting so many other people who are either GBS survivors or their loved ones who also wanted to give back to their GBS community was really rewarding.

But I did learn something new. I learned more about the inner workings of the foundation. I found out that we have the highest possible score from Charity Navigator. I found out that the foundation sees its goal just like I would want it to. It's a place to support people with GBS and their caregivers. Estelle Benson  the founder and director said that the organization doesn't exist to boost her ego so she can say she's the director of a giant organization. She's here for the patients and caregivers. And that's why I became a chapter leader. I want people to know that just because they have a super rare disease doesn't mean there alone. Everyone else I met at this meeting confirmed that 100%. All the staff and volunteers at the foundation are there so that patients and caregivers can know that they are not alone.

(Just now, while typing this blog post, someone commented on one of my Facebook pages that they wished someone could help them in their country. It took me a minute to refer them to this website. If they tell me they found someone in Mexico City or if I never hear from them again I'll still feel that today was a great day.)

Anyway, I'm really really happy that I became involved in an organization whose mission exactly matches why they became involved in it. When people need not to feel alone I want to let them know that I am there for them.

So if you want to help me support this foundation click here and give them money

Also, since all of my blog posts have to be about at least two things, I'm really proud of myself. This weekend I....

  • Took  an Uber to Penn Station, got on a train to Philadelphia and took a cab to suburban Philadelphia all while carrying a suitcase.
  • Arranged in advance to have a  bidet installed in my hotel room
  • Dealt with the fact that it couldn't be installed until the morning.
  • Successfully enjoyed buffet style eating without loved ones filling my plate.(I found new love ones).
  • Hopefully, didn't talk about myself too much. Yeah, this was a training for me but it wasn't about me.


  1. Michael, I just wrote you a lengthy comment, then I lost it when the phone rang. I just wanted to say you're an awesome human being and I hope you have a great time at the marathon. I couldn't agree with your positive comments that you posted hear about the foundation and the wonderful people that were at the training weekend. Bless you and take care

  2. So glad to read of the good work the Foundation does, and not of how you managed overnight without a bidet.


You do not have to be nice!


Related Posts Widget for Blogs by LinkWithin

This is not me

This is not me
Not me.

Blog Archive