Plunging is Easy, Raising Money is Hard: Lessons to Help Other Rare Disease Fundraising Organizations
By Barbara Noyes, co-founder of Nyack, NY’s Penguin Plunge
The Penguin Plunge of Nyack was never meant to be an "annual" thing; it was just a couple of friends who wanted to put together a one-time winter plunge into icy Hudson River waters in southern Rockland County. If we were going to do something that crazy, we figured we should do it to raise funds for a good cause. As parents, we both knew there was no better cause than helping a family that had exorbitant medical bills as a result of their child’s serious illness or condition. Seeing anyone you love in pain is bad enough, but when it is your little one, it is so much worse.
LESSON #1 AND #2: Discovering the world of rare disease
Well, life is what happens when you are making other plans. When we realized how many families needed financial assistance due to their children’s ailments (Lesson #1), we ended up incorporating. While most people think of childhood cancer, devastating as it is, as their primary fundraising target, our Lesson #2 was the discovery of a world of rare diseases and conditions hitting families hard. These included ailments causing seizures of all types, others caused by viruses such as bacterial meningitis; life-threatening blood sugar conditions; and ataxia-telangiectasia (A-T), which seems like a hodgepodge of degenerative diseases from which children usually don't survive past their twenties.
LESSON #3: you never know what can help someone
In the case of the latter, I remember being on a ship in Antarctica when I was talking to a fellow passenger who told me that he was on the board of some rare disease organization in England that afflicted less than fifty children. I asked him if it was ataxia-telangiectasia and he was stunned that I had heard of it. We exchanged some information over the years that I did pass on to the parents of this particular child. Lesson #3: You never know what can help someone.
LESSON #4: listening and understANDING THE CHALLENGES OF RARE DISEASE
Parents of children with rare diseases, I have found, are doubly worried by the lack of research regarding the illness threatening their child. I’ve witnessed their fervor raising funds and awareness for their child's disease, and the special bonding that happens on Rare Disease Day on Feb. 28, when a sense of community overrides their struggles with loneliness, isolation, and attempts to explain their children’s condition to others.
This taught me Lesson #4: the importance of really listening and understanding the challenges people are enduring. Whereas everyone seems to understand how cancer affects people, not so much with something like glycogen storage disease (GSD). Our natural inclination might be to fix things and "cure" illnesses, but the scary reality is that many of these conditions will never go away, and the best patients can do is manage their symptoms. Since the thing these parents want is something we don't have the power to give them—healthy children—one of the greatest gifts we can offer is a sympathetic ear. If the Penguin Plunge can help parents feel less alone and more financially secure, we consider that a double win.
LESSON #5: HELPING the ENTIRE FAMILY
While we put children as beneficiaries of our fundraising efforts, we hope to help the entire family, including any siblings, because as we learned in Lesson #5, it’s hard to be the healthy sibling of a seriously ill brother or sister. When we plan our events, we try to include siblings, age permitting.
One of the things we avoid is a sense of desperation. If I showed my personal anguish over test results or bad developments, it would only increase the family's sadness. So, we strive hard to keep everything positive, and help where we are needed. This year, one of our little girls was in palliative care, so we tried to arrange fun events that have nothing to do with fundraising, but still adjusted to safeguard health and safety. For example, local law enforcement had a police car filled with toys they drove to her house in a parade of lights and sirens. And as in past years, we participated in Nyack’s annual holiday parade, with current and past recipients who were able to ride on our penguin float. It's loads of fun, so, while we generally don't get donations, I consider it a fun-raiser!
Lesson #6: RUNNING PROMOTIONAL content BY THE FAMILY
Lesson #6: When fundraising, run promotional materials by the recipient’s family first. I often let the parents write their children's stories when we start publicizing that year's beneficiaries. One time, a mother of a child with A-T had provided information regarding the disease’s early mortality rates that would have been devastating for her son to read. Since he was of reading age, I didn’t want him or his beautiful family to experience any more pain than they had already. I was so glad that I ran it by her first, and I implore anyone who is running a fundraiser for someone, child or not, to do the same. Maintaining hope and determination is crucial. Even when the diagnosis is dire, you want to make every moment count.
Lesson #7: GETTING a 501 c3 charitable designation
To get to the nitty gritty of fundraising, it is important to have a 501 c3 charitable designation. It was relatively easy for us as we are all volunteers, and not a foundation that stores the money. While we keep a few thousand dollars in the bank to use as seed money for our upcoming fundraising year, we give what we have raised for the children in whose names we have raised it. It keeps it simple. I have a very organized treasurer who does our taxes, but we keep a record of our limited expenses: postage, insurance, tee-shirts, etc., and give away the rest. We’re proud to say we’ve donated over $660,000 in fourteen years!
LESSON #8: HELPING LOCAL FAMILIES
Everyone always asks how we find our families. There are so many stories of worthy children to help in a country of 300,000,000+ people, but we’ve found that concentrating locally helps us raise more because people can see the direct effect of their generosity. That is especially important when it comes to rare diseases because, once you know someone who has a rare condition, it makes it more personal and real. A disease that affects .05% of the population doesn't sound like a problem, but when your child goes to school with someone who has that rare condition, it does raise awareness as well as compassion.
We help two to four local families each year, but in recent years, we’ve stayed at the low end of that range due the small size of our committee. There was a time when we had to look for sick children, which definitely sounds creepy, but now a lot of people come to us with suggestions. We tend to look for children who slip under the radar, hence rare illnesses. If many fundraisers have already been held for a child, we tend to look elsewhere. Once we’ve chosen our two recipients early enough in the year (usually around September), we announce it. Rather than turn people away, we just consider them for the following year.
Every child is important to us, but some families embrace us more than others. We know how hard it is to ask for help. Some families might be reluctant to appear hard up, or suffering, or worse, the object of pity. That is why we celebrate our recipients. We need them to share with their friends and family what we are doing because we do other fundraising besides the actual Plunge, and we need their input.
LESSON #9: Being part of a larger family
Our most rewarding moments are when the children become part of our “Penguin Family” and either pass it forward by plunging themselves as they get older or remember us fondly. A number of parents are still supportive of the Penguin Plunge on Facebook and spread the word for us. I am happy that they know how much we care, and I am proud when we have a good fundraising year. I put my heart and soul in it. I do probably have to dial that back a little, because there is so much that I can't control, but when we meet our recipients, it's off to the races! (And we literally did races this year!)
My saddest moments are, not surprisingly, when our children pass away. We have lost a few over the years, mostly from cancer, but it is still a blow. There are no words, and I hope that we were able to give the families some good memories.
I keep saying that this year will be the last, but the universe keeps offering new possibilities to help. I read a saying recently to the effect that we don't have the right to leave the world as we found it, but to make it better. I treasure the opportunity to help some fantastic people and to learn what true courage is from these families. I appreciate everything and strive to find the best in every moment because that is all we have.
