Monday, December 29, 2008
Begging for Change: The Dollars and Sense of Making Nonprofits Responsive, Efficient, and Rewarding for All
Brilliant, fascinating read, and the man is pretty awesome, too!
My newest fascinating friend, however, is a woman by the name of Wendy Martin. MG Onliners might know her as "Wendy Usually Wanders" because this is the name of her blog. It is only a year old and has already seen over 717,000 hits. She has MG, in addition to a number of other ailments, but has lived an amazing life despite her illnesses. I just received a copy of an interview with her that I will be adding to the AL chapter's MGFA newsletter sometime this week. She is a member of the LDS church and a travel fanatic! Give her a reason and she might just come for a visit. If she does, she will certainly have her lovable Zeke with her. What an amazing service dog! Zeke (via Wendy) has inspired me to research service dogs for companionship of MG patients. I think having this extra "help" is simply a bonus to the love and companionship having such a relationship offers. Her website can be found here. http://wendyusuallywanders.wordpress.com/.
Friday, November 21, 2008
As if that wasn't enough, the best reason to adore Robert Egger is his refreshing ideas on how non-profit organizations should be managed. He has careful insight to non-profit operations and he understands WHY we just aren't meeting our potential. I am still reading this book. I hope he will reveal to me soon HOW to make them work. His ideas, so far, are right on target.
He recently came to Birmingham and has a video clip on his website about his trip. It's kind of cool seeing him in front of Vulcan.
If you are in any way affiliated with a non-profit organization, you should take the time to read his book.
Thursday, November 13, 2008
Life can be tough but I've been re-wired to handle the hard stuff. I was born a very emotional person. That was before I come down with myasthenia gravis. Living with an incurable and debilitating disease can make you feel a number of different things - denial, anger, apathy, regret, sadness, resentment, without religion and worst of all, alone. I've felt them all. During the short time that I endured MG, God instilled in me the determination, the passion and the strength needed to overcome my own personal and emotional demons, so that I can contribute in a meaningful and significant way to putting an end to this and other autoimmune diseases.
Before the disease, I never realized I had placed limitations on my potential to do great things. Becoming sick and losing the life that you always take for granted makes one realize how lucky we all are to be able to wake up, just get out of bed and tell someone you love them. During my remission, whether it be another year or the rest of my life, I know that I can do something to save a life.... maybe even many. MG affects so few, yet so many and MG can be fatal. If you took all of the MG patients in the US and put them in a football stadium, they would likely fill every seat. Those who have not yet been diagnosed would fill another three stadiums. Yet, MG is the most understood autoimmune disease and there is a vaccine in development. Why have we not yet wiped out MG? It's because of money and lack of knowledge and support. A cure for MG will lead to a cure for other autoimmune diseases, such as ALS, or Lou Gehrigs disease.
No, I don't exactly have all of the answers. I don't have the cure (but I know who does, http://www.curavac.com/.) God has seen fit to leave that up to more qualified people. What I do have is time, wonderful, love-filled, awesome and breathFULL time. Time to share myself with family and friends. Time to devote myself to strangers with myasthenia. Time to pray for patients with Lou Gehrig's disease (but for them, time is running out). Time to talk to doctors and nurses to educate them so they can be ready when the next patient comes through that door. Most of all, time to make a difference.