My Nonprofit Reviews

zuzu
Review for Break The Chain Kennel Kru Inc, Greensboro, NC, USA
Break the Chain Kennel Kru, begun by Sylvia Mayon, offers free outdoor kennels in High Point NC to keep area dogs from being tethered which complies with current laws. Recipients are pre-screened, must receive government assistance to qualify & agree to get their animals(s) spay/neutered. Kennel recipients partner in building their kennel & "pay it forward" by helping build someone else's kennel. It's hoped that every recipient worked with will become advocates for spay/neuter & unchaining in their neighborhood. Regular follow-up visits are done with BTK families, continuing to educate them on responsible pet care, heartworm prevention, and family support. The belief is that the stronger their bond with these families the greater the chance the dog(s) will become closer members of that family. Some have even become inside family dogs!
Review for Christopher & Dana Reeve Foundation, Short Hills, NJ, USA
My mom became a quadriplegic after a fall in 2002. The first place I contacted for information was the CRPF, having known about them from his book Still Me. The people I talked to and corresponded with by email were incredibly informative, supportive and encouraging. Life with a spinal cord injury isn't easy by any means, but the CRPF has put together an amazing support system with online information, peer mentors, telephone support, a free guide for newly injured people, webinars, live chats, online forums, a lending library, resources, links and referrals. Whenever I hear of someone being injured this is the first place I direct send them for information and support.
Review for Interstitial Cystitis Association, Rockville, MD, USA
When I was told I had IC in 1990 there was very little information available for doctors or patients. I was fortunate that I had one of the best doctors in the nation who directed me to a support group that had materials from the ICA. Soon after that my sister encouraged me to get a computer and "on the net" (this was the olden days!) and join online chat groups that she had found about IC. I've been using the support system of the ICA ever since. Whether it's checking on their website for new treatment protocols, checking the Facebook updates, getting my ICA email updates or directing newly diagnosed people to their website, the ICA plays a critical part in IC treatment for anyone who is going through the journey of learning to live with IC and the many autoimmune issues they will also have to deal with. The ICA freely shares information, support and guidance to members and non-members, patients, family and doctors; and has been building their website resources as well as trying to keep support groups going in real locations as well as on the internet. The ICA has given great support to my doctor, Dr. Robert Evans, who is dedicated to IC research and finding a way to relieve the pain that limits our lives each day. They have given him a platform to share his knowledge and a place to share his ideas with other researchers. I'm sure their support has allowed him to get some of the funding and attention he needs to continue the research he is doing. I know that research will eventually help me on a personal level, because he SEES me and he KNOWS me and how IC AFFECTS me, and he's working hard to find something to HELP me and others, and the ICA HELPS HIM HELP ME.
More Feedback
I've personally experienced the results of this organization in...
the increase of treatment options for IC; better awareness & information sharing about IC for patients & doctors;that IC is now officially recognized by Social Security as a disability; the ability to share my knowledge with others.
If I had to make changes to this organization, I would...
stop having the huge parties, galas, mailings, events asking for money & use THAT money on a fund for patients who need help paying for medications, doctors & insurance after diagnosis (& don't tell me they have to spend that money to get donations).
What I've enjoyed the most about my experience with this nonprofit is...
Their move into Facebook- it's been so amazingly helpful to people who are just now being told they have IC. It brings "seasoned" ICers together with newbies to share their experiences and let them know they will survive.
The kinds of staff and volunteers that I met were...
The person that takes care of the IC Facebook site and ICNetwork is a great woman and has been involved for years. She's knows her stuff about IC and works hard.
If this organization had 10 million bucks, it could...
Make a fund available to provide drug insurance/medical insurance coverage until people are able to qualify for Medicare once they have to apply for Social Security Disability.
Ways to make it better...
I never had IC.
In my opinion, the biggest challenges facing this organization are...
Competing for funds with all the other worthy organizations needing attention - just in my life alone there is the Alzheimer's Assoc., Chris.Reeve Paralysis, MS Society, SCI Life, Marc Brunicotti, Hospice, they all deserve.
One thing I'd also say is that...
The ICA allows patients, family members, doctors, friends & anyone interested in research to get objective, up to date information, share stories & ideas, find referrals and help. The Interstitial Cystitis Association is a great non profit organization.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010