Kerry Hughes: ‘Raring’ to Go, and Giving Back 10-Fold
If I were to ask you what day it is today, I’d bet most of you would say one of the following:
It’s Saturday – thank the heavens above!
It’s the last day of February, so we’re finally on the glide path to spring.
Or maybe even, it’s World Sword Swallowers’ Day. Down the hatch!
And, you know what? Technically you’d each be right, but you’d also each be forgetting something.
Something that’s often overlooked, however, is very important.
Today is Rare Disease Day.
What is that? Well, it’s a day that’s dedicated to all of the lesser known diseases that often are without funding and focus, yet which cause real people real pain and suffering.
What qualifies as a rare disease? Well, according to the Orphan Drug Act of 1983, a rare disease is any disease that affects fewer than 200,000 people in the country. But here’s the rub, because there are almost 7,000 rare diseases, a lot of people in the U.S. suffer from a rare disease.
It’s estimated, in fact, that 30 million people in the U.S., or one in every 10 people, suffers from a rare disease.
Think about the size of your extended family. I’ll bet you have at least one aunt, uncle, cousin, sibling, child, parent, or grandparent who has to deal with a rare disease on a daily basis.
I know I do.
I also know that since these diseases are not common like, say, cancer, they don’t get the big research dollars thrown their way. As a matter of fact, nearly half of all rare diseases don’t have a specific foundation funding research for a cure. It’s also tougher to diagnose a rare disease since there typically isn’t a vast amount of information on it, which, naturally, is because so few people have it.
Now let’s take it one step further. Consider a child who has a rare disease. Actually, 50% of people suffering from rare diseases are children, most of whom won’t make it past their 5th birthday. What if your child was one of the afflicted? Wouldn’t you move heaven and earth to raise funds to help find a cure for what ails him or her? I know you would. I would too. However, what if it wasn’t your child who was suffering? Would you still be so determined to help?
It’s okay. You can answer honestly. First of all, we can’t hear you, and secondly, most of us are so consumed with our own little whirlwinds of activity, that we often either don’t feel compelled to or don’t feel we’re able to reach out to those beyond our immediate little clan.
However, you would somehow, someway find a means of helping if your name was Kerry Hughes: a non-caped crusader for childhood rare diseases, and a friend of mine whose selflessness and perseverance I greatly admire.
In 2009, a daughter of one of Kerry’s close friends, Bridget Kennicott, was diagnosed with Batten Disease. Batten Disease is a rare childhood disease that is inherited, and causes the child to suffer progressive neurological impairment. Children with Batten Disease at first are perfectly healthy, happy kids developing normally until their irreversible decline sets in. Kerry and her young friend, Bridget, are pictured below.
Knowing how tender-hearted and caring Kerry is, I’m sure this diagnosis simply tore her up inside. And yet, instead of sitting idly by like most of us might, she pulled herself up by her bootstraps, and decided to turn her despair into positive action. She quickly picked up a torch, illuminating the dire need for funding for rare disease research and advocacy.
Today, Kerry is founder and President of Harmony 4 Hope, a not-for-profit company that advocates for children with rare diseases. Harmony 4 Hope (H4H), as the name would imply, uses music as a medium to garner support from the community, create rare disease awareness, lift up the children who are suffering, and, most importantly, raise money for rare disease research in hopes of finding cures.
“Play This Forward” is a program that Kerry and her crew dreamed up in which gently used or new iPods, complete with custom playlists, are sent to kids with rare diseases nationwide to make them grin and maybe even kick up their heels a bit. Kerry’s own 10th grade son, Nathan, and his friend, Brendan, manage the technical aspect of the program. If Nathan grows up to be anything like Kerry, his important role in H4H will merely be the first step on a long path of giving back to those in need.
In addition to “Play This Forward”, H4H holds live benefit concerts to raise money for research.
Okay, since this is Rare Disease Day, there are a couple of super simple things we all can do to honor this special day. We can show our support by:
1) Nominating H4H to be the charity recipient for the Lake Zurich High School Charity Bash 2016. (Charity Bash is a fundraising two-week period at the high school during which time a number of student-sponsored activities occur to raise funds for a pre-determined cause.)
It’s an easy nomination process, really.
Simply send an email to Christopher Bennett at Lake Zurich High School: firstname.lastname@example.org and mention the following points:
“I’d like to nominate Harmony 4 Hope as next year’s Charity Bash recipient because:
~ H4H is a 501c3 not-for-profit organization based in Lake Zurich
~ It was founded by a former educator and mom of two LZ95 students
~ It has supported children of LZ95 Staff (Rett Syndrome), students in LZ95 (Alternating Hemiplegia of Childhood Foundation) and neighboring communities, i.e. Barrington (Batten Disease), and Palatine (Epidermolysis Bullosa) and Global Genes – a worldwide recognized leader in Rare Disease activism.”
I mean, how hard is that? Anyone can send in an email, too. Whether you’re near, far, or in a car. Well, okay, if you’re in a car, wait until you’re parked at least. Use some common sense, for goodness sakes!
2) Making a tax-deductible donation to H4H’s BAND TOGETHER 4 Rare Disease online fundraising campaign – Click here to view details.
Consider the company you work for as well. Many corporations set aside large sums of money for charitable giving. All you have to do is place a quick call and see if they have funds to spare for H4H and its rare disease advocacy. It can’t hurt, and it might just do a whole lot of good.
You can reach Kerry/Harmony 4 Hope through the following channels:
830 West Route 22, #44
Lake Zurich, IL 60047
I mentioned the “Play This Forward” campaign earlier. H4H also collects new or gently used iPods and iTunes gift cards to help customize the playlist per recipient. (Kerry, you may just have received a new iPod, iTunes gift card, and a donation from a certain pondering mom at your front door. I would check if I were you!)
Kerry has dedicated a huge part of her life to helping kids in dire need with no payback other than their delightful smiles and gratitude.
Her selflessness, without a doubt, is something to honor and celebrate.
Wouldn’t it feel good to help her organization and the kids who are suffering, in turn?
Thanks for your devotion to these special children, Kerry! Your tenacity and commitment to your cause are nothing short of awe-inspiring!
If you want to be further inspired by another giving soul, check this out: Paying it Forward Is Alive and Well on Long Island.