August 17th – National Nonprofit Day

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Today is National Nonprofit Day. What kind of person starts a nonprofit anyway? I used to think it had to be someone that was a probably a celebrity, really smart, well connected, had access to a great deal of money and probably had lots of business sense. I had heard of the Bill and Melinda Gates Foundation, Michael J. Fox Foundation, Susan G Komen Foundation, Make A Wish Foundation, and many others that I assumed had very traditional business type beginnings. But as I did more research, I found many of these organizations had very humble beginnings indeed!

Most of us know about the pink ribbon, used to represent those struggling or lost to Breast Cancer – you can see it everywhere! You may even know that the Susan G Komen Foundation was started by Susan’s sister, Nancy Brinker, in honor of Susan after her passing. If you have not heard the details of that incredible story, you can read a quick synopsis here. Susan made her sister promise she would do something to help other women affected by breast cancer. The closing lines of a speech Nancy made recently in Nevada, are powerful. She said:

“I wanted to do something to let her (Susan) know how special she would always be in my heart. I was haunted by our last conversation and lay awake sometimes all night wondering what I could do to help other women with breast cancer. Could one person really make a difference?”

Today, Susan G Komen, which was started with $200 and a shoebox full of potential donor names, has grown into the world’s largest nonprofit source of funding for the fight against breast cancer. They have invested more than $2.9 Billion in research, outreach, advocacy and programs in more than 60 countries.

Make A Wish Foundation has similar humble roots. It started when a 7 year old boy named Chris, who was dying of leukemia, told a friend (who was a US Customs Agent) that he wanted “to catch bad guys with him”. Agent Tommy Austin reached out to his friend, DPS Officer Ron Cox, and explained the situation. Ron and the entire Phoenix Police Force was inspired into action. On April 29, 1980 Lt. Col. Dick Schaefer gave Chris a “Smokey Bear” hat and one of his own old badges, and Chris became Arizona’s first and only honorary DPS officer. The next day a group of officers took a uniform to Chris’ house, where they also set up cones for Chris to steer his battery-powered motorcycle in order to qualify for a motorcycle officer’s wings. But when they return the next day to present the wings to Chris, he had gone back into the hospital.  With his DPS gifts all around him, clutching his new wings, Chris passed away a short time later. You can read the inspirational story of how so many men did so much for a young boy in such a short time here.

Not long after Chris’ passing, at an officer's retirement party, Officer Schankwitz spoke to Kathy McMorris, the wife of a DPS officer, about creating a wish-granting organization. That summer, a group of working-class DPS officers, friends and family got together and established Make-A-Wish Foundation.

Make-A-Wish granted 15,300 wishes last year alone – on average, one every 34 minutes. Linda Pauling, Chris’ Mother is quoted as saying:

“It's been more than 30 years since my son Chris received his wish, and I am still amazed and inspired how one little boy's dream to be a policeman has touched the lives of so many thousands of people.”

So, it isn’t always the richest people, or the celebrities or even those with business degrees that start nonprofits. It is often individuals that have been touched by the most difficult of circumstances, individuals with a passion, and a desire to make a difference for others.

Next year will mark Hope for HH’s 10 year anniversary as a nonprofit organization. The Founders (all moms of kids with HH), and the incredible volunteers that have joined us, have dedicated their lives to making a difference for families and individuals affected by this rare and often devastating syndrome. Together, we have celebrated the successes for some, and mourned the incredibly heart-wrenching losses for others. We are passionate about what we do and inspired by the stories of courage we get to hear everyday.  You can learn more about the Founders’ personal stories were featured in Epilepsia and can be found here.

Hope for HH is committed to increasing awareness, improving diagnosis and treatment pathways, supporting individuals and families through connection and education, and funding cutting edge research to one day find a cure. We are an all volunteer organization that relies on the talents of those who are willing to give. Could that be you?

Perhaps after reading some of these powerful stories of humble beginnings, you will be inspired to celebrate National Nonprofit Day by volunteering. It can be something as simple as sharing your story so that others may be encouraged or feel not quite so alone. Or perhaps something a little bigger like volunteering to help with a project or program that is close to your heart. Whatever you do, take a moment and remember:

“Each one of us can make a difference. Together we make change.” - Barbara Mikulski