Yesterday was a roller coaster of a day. I attended the memorial of Jennifer Jaff, the founder of Advocacy for Patients. Jenn was a very important person to me in the 3 years that I knew her. Not only was she a great friend of mine, but I looked at her as a mentor of mine. Here and I grew close as we shared emails, phone conversations, meetings and saw each other at events. Jenn also guided me as I created the Intense Intestines Foundation in so many areas including fundraising requirements, filing for 501(c)(3), websites/software which can help and much more. We had so much in common, not only with our Crohn’s disease but with our passion to help others as well.
Jennifer was very close with Mike McCready of Pearl Jam. When ever I spoke with Jenn she always had such amazing things to say about Mike and how much of an incredible help he was. During one of the lengthy meetings at her office she discussed how Mike and his wife Ashley were a huge reason for her being able to follow her dream and create Advocacy for Patients. Which allowed her to use her great knowledge, to help patients all over the US with the complicated health care system.
At her memorial yesterday Mike and Ashley both had some touching and passionate words about the person Jenn was to not only them, but the many people she helped with all of sorts of disabilities and diseases. They both talked about the endless hours that Jenn would work and the ideas she would constantly have in order to raise awareness to so many causes.
Jenn wanted to make sure that people with and without diseases knew what was at stake before the election. She inspired Mike to make this video on living with a pre-existing condition and how hard it can be. Mike even discusses how hard it is to deal with insurance companies and health care in the US. Jenn fought the insurance companies for countless people, filing piles of paperwork and taking them to court when necessary. This video was her idea to raise awareness for an important topic in the election.
Below is the video that Mike made:
I met Mike once before when we both ran in the Team Challenge program in Napa for the CCFA. After we all remembered Jenn and her incredible life yesterday, I was lucky enough to have a few moments with Mike. He is an amazing guy, who truly wants to help as many people with these diseases as possible. I had to let him know how important his work was for so many of us. Having a celebrity voice talking about these conditions, makes it more comfortable for all of us to discuss them. We agreed that having a support network for any patient with Crohn’s disease or ulcerative colitis was one of the best ways to cope with having an IBD.
Having a voice like Mike’s is a great thing. He’s shown us all that it’s okay to talk about our IBD. If he can talk about it in a magazine or share a video on Youtube about it, then we all can talk about our disease.
Never Stay Quiet!