By Frances D. Saldana and Jimmy Pollard
For all partners working for a cure to Huntington’s Disease, we recognize them on March 23rd, It’s called “Huntington’s Gratitude Day”. The gratitude is for the partnership between families touched by HD and the scientists in the quest for a “cure” (or effective treatment) for HD. In ways both large and small, you are a partner.
Families thank scientists all the time! Scientists thank families every chance they get. But this is a day for all of us to recognize our partnership. It’s unique.
Learn More at UCI – HD-Care website
Hi,
I am contacting you and everybody I’ve worked alongside in the Huntington’s Disease world over the last, yes, 38 years!!! I’m inviting you to join me in a worldwide social media campaign. It’s called “Huntington’s Gratitude Day” and it’s Saturday, March 23rd.
The gratitude is for the partnership between families touched by HD and the scientists in the quest for a “cure” (or effective treatment) for HD. In ways both large and small, you are a partner.
Families thank scientists all the time! Scientists thank families every chance they get. But this is a day for all of us to recognize our partnership. It’s unique.
You might say that the first milestone in our partnership was the US/Venezuela Huntington’s Disease Collaborative Research Group. Nancy Wexler led a team of physician scientists to the shores of Lake Maracaibo to families living in extreme poverty. Those families willingly gave samples of their blood, skin and more to them in hope that they could, as Marjorie Guthrie used to say, “do something about HD.”
Their partnership and contributions, with those of other families and scientists, led to the discovery of the HD gene in 1993, March 23rd. That’s why we do it on March 23rd.
Since then, our partnership has achieved much. Because we haven’t cured it yet, it’s easy to forget all we’ve already accomplished. Yes, we certainly have a long way to go. In my time, our partnership has led to testing, CAGs, “gene-free” babies, clinical trials, and all kinds of research. That’s a short list! To some degree for many, we have changed the experience of living with HD.
More importantly, whatever is yet to come will be built on the foundation of our family/scientist partnership. Since we are all partners, it’s easy to overlook the fact that we’re part of a quest bigger than any one of us.
We’re all partners. Some live at home, others work in labs, clinics, or in an office, at a desk, a lab bench or operating an MRI machine. You may be walking your own HD road or caring for a loved one; a healthcare professional, association employee, or a volunteer in a research study or organizing an event. Perhaps you’re a participant in a walk, a banquet, a survey, a support group or have jumped from an airplane to raise funds. Gratitude Day is not to thank each other, rather it’s a day to recognize, appreciate and call attention to our partnership.
We depend on it to make our shared vision of “doing something about HD” real. Please join me and be a part of it.
It’s easy! Please use your social media accounts to mark Gratitude Day on the 23rd. You can start now! Use our Gratitude Day logo in any way you like. It’s attached to this e-mail. Add it a post or message.
We have a hand sign we use called “H-Hands” to symbolize the day and our partnership. Essentially, it’s the traditional “heart hands” sign, with both index fingers extended upwards. It forms a rough “H,” which stands for Huntington’s, Humanity (ours!) and Hope. The picture attached will show you more clearly!
You can participate by taking a picture of yourself or your family doing H-Hands. Or you can gather your bench, office, lab, or clinic mates together and take a picture of your team all doing H-Hands.
Last year we had lab teams from places all over the planet post pictures, from Melbourne, Australia (Dr. Julie Stout’s Lab) to Lausanne, Switzerland (École Polytechnique Fédérale de Lausanne). Clinics from Ulm, Germany to across the USA and Canada posted pictures. A few hundred families, small ones, and extended ones, from North, Central and South America, Australia and across Europe posted pictures, videos, and messages. HD Associations around the world actively participated because, on Gratitude Day, we are One in recognizing our partnership.
There are world-class TikTokkers, Instagrammers, Facebookers and Xers among us! Meme makers of all kinds! You’re only limited by your cleverness!
You can use the hashtag #hdgratitudeday.
Gratitude Day was born about four years ago and continues to grow. It comes from my work with a small team of volunteers for Factor-H. Factor-H is the only charity serving those pioneering families in Venezuela, the children, and grandchildren of those initial partners. They remain living with HD in extreme poverty, with the highest incidence of HD in the world. I’m on the board of Factor-H.
We hold those families and Nancy’s group of neuroscientists up as the prototype of our partnership, with all of us having joined along the way over the years. By calling attention to their situation, we are also trying to raise some money to continue the work that Factor-H is doing. I hope you take a minute to check out Factor-H.org to look at all we do. You’ll be pleasantly surprised. You can donate there too.
Whether you donate or not, please join us in marking our partnership, scientists, and families, on the 23rd …or starting now. We are unique in science.
If you post something, please send me your postal mailing address, wherever you are in the world. I want to mail you a small souvenir of your participation in Gratitude Day 2024.
You know me. So you’re aware that I’m long-winded. I suspect you’re not surprised that this e-mail is long. But I wanted to explain Gratitude Day in full. And to ask you to join me.
One more thing! I appreciate any help in getting the word out! Feel free in sharing posts, forwarding this e-mail, anything and everything.
Partners, one and all!
Jimmy
