I would like to begin this article with some of my favorite quotes about being a patient advocate:
“Advocacy: To change ‘what is’ to ‘what should be’”“Strong people stand up for themselves. But the strongest people stand up for others.”My final quote is one that was introduced to me by one of the strongest patient advocates I know, Judy Roberson. This quote is used by Judy every time she speaks publicly, and because of her, it is now used by many HD advocacy groups. “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”—Margaret Mead
Whenever I think of the power of the patient advocate, I think about the polio epidemic. This is an event that I have talked about for years when I speak about what a group of patient advocates can accomplish. What Franklin D. Roosevelt, Basil O’Connor, and Eddie Cantor, along with all the powerful advocates, did to combat the polio virus was astounding. A vaccination for the polio virus was the result of their efforts. The world was forever changed because of the March of Dimes advocates.
I started my journey as a patient advocate over ten years ago. I quickly learned that to be a patient advocate, you have to find a cause you are deeply passionate about. One that you can feel deep in your soul that brings out a power in you that you didn’t know you had. You must be passionate, compassionate, persistent, patient, resilient, and strong. You will endure disappointment and pain when your countless hours of work don’t go the way you planned.
The patient advocate knows what I am talking about, but the passion and strength we have make it so that we “won’t back down,” and we continue to fight and push on, even when things don’t go our way. We don’t have time to cry over a blow; there is too much work that needs to be done and too many people that are counting on us, so we push on.
There are those brilliant moments when you work so hard on a project, and it succeeds, and the change happens right before your eyes. These moments are what it is all about—to know all the work, blood, sweat, and tears have made a difference for the families you are serving. There is no better feeling in the world for a patient advocate than when you get to see the world change a little because of your efforts.
The patient advocacy spirit within the Huntington’s disease community is strong. This is a family disease, and families have been advocating for years and years and generation after generation. I have had the honor of meeting HD patient advocates who have been fighting for over 30 years. Being a patient advocate myself, I am here to tell you that at times it is exhausting. That is why I am always in awe when I get to meet the “pioneer” patient advocates. Their persistence and strength to keep going after so many years is truly incredible. Although there are still no therapies and no cure for our loved ones living with HD/JHD, can you imagine where we would be if it weren’t for those early advocates who fought so hard for our families to get support, care, and to find the gene that has affected families for hundreds of years?
Without the patient advocate, change wouldn’t happen.
I am so excited that we are using the month of December for “Help 4 HD Live!” to highlight the patient advocate. They call this holiday season the “season of giving,” and I can’t imagine a person in this world who is more giving than a patient advocate. They are truly the most selfless people walking this earth, fighting hard, not for themselves, but for those who can no longer fight for themselves.
We have decided to name the series of shows we’re doing in December “Celebrating the Season of Giving.” I would like to share with you a little about the four advocates we will be interviewing and a little about what they have done and are currently doing to advocate for our HD community.
Lauren Holder, North Carolina
Lauren is an incredible advocate and person. Lauren has been advocating for our Huntington’s disease community for 10 years now. She has hosted many Huntington’s disease fundraisers. She started her advocacy journey by going to Washington, DC, twice a year to speak on behalf of the Huntington’s Disease Parity Act. She started educating law enforcement after her father went missing for 12 hours, and she was unable to get any help, due to the lack of knowledge about HD.
She has worked with NAMI (National Alliance for Mental Illness) to get CIT (Crisis Intervention Training) in North Carolina for law enforcement. Lauren was the HDSA North Carolina president for many years before she had to step down to help care for her father. In 2004, she was honored with the HDSA Person of the Year award. She has written a book about living with Huntington’s disease and is in the process of composing her second novel.
Recently, Lauren and her father’s story was featured in an article in Good Housekeeping. Lauren is a powerhouse, and we are lucky to have her voice telling her story and educating people about what it is like to live with Huntington’s disease.
Havanna Lowes, Missouri
Havanna is one of the most brilliant 17-year-olds I have ever met. Havanna visited Washington, DC, for the first time in June of last year. There, she was personally able to speak to four Congressional staff members about HD and the parity act. Havanna spoke to her senator from Missouri, and he signed the parity act in July.
Havanna has spoken at many education days. Just recently, she spoke at the Huntington Study Group meeting in Nashville in November. She is passionate about Huntington’s disease youth programs like NYA (National Youth Alliance) and HDYO (Huntington’s Disease Youth Organization). She has held fundraisers and has given talks about HD to her community.
Havanna says, “Advocacy is about telling your story to your community and getting people involved and informed.” Havanna is an amazing young lady who I believe will go so far in this world and will continue to be a champion for HD.
Marie Clay, New York
Marie Clay has been a Huntington’s disease advocate for 20 years. Marie has educated many people about HD over the years. She has done law enforcement HD education, CIT, firefighter and first responder training, hospital training, and much more. She has spoken to many community organizations, like the Rotary Club, about HD.
Marie has been on Capitol Hill many times to speak up for the parity act, and recently, in September 2015, Marie spoke on a panel at the FDA (Food and Drug Administration) Patient Focus Meeting. Marie was able to tell members of the FDA about the challenges living with Huntington’s disease.
In 2008, Marie started a support group in Virginia Beach and has held many fundraising events. Marie worked very closely with Sitrin, a care facility in New York state that now has a unit dedicated to HD/ALS. She has introduced many families to Sitrin, and everyone’s hope is that one day we will have more options like Sitrin available to our HD community.
Marie is one of only two employees that have been honored twice with the Volunteer of the Year award by GEICO Insurance. Marie has been fighting for HD families for many years, and we are thankful for all she has done for the HD/JHD community.
Kinser Cancelmo, Massachusetts
Kinser became more involved with both HD and JHD after her daughter Meg passed from JHD after spending four months in the hospital, with doctors unsure about how to help her. Kinser lost her husband shortly after she lost her daughter.
While Meaghan was in the hospital, Kinser enlisted local news teams and radio stations to do programs to raise awareness for JHD. The local radio station had Kinser on their morning talk show to speak about JHD.
When Kinser lost her daughter and her husband just a couple of months apart from each other, she decided it was time to work on starting a nonprofit business in memory of her daughter, “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation, Inc.” Kinser says, “I was appalled at the lack of medical services and places available for children/teens her age that had illnesses that the medical community couldn’t handle. Especially JHD. I wanted to raise money for researchers to continue working on medicines and hopefully a cure for this horrible disease. A group of my friends, who are now Board members of my business, began working on a fundraiser to raise these funds to send out to UC Davis in California. The fundraiser was held in September 2016, raising more than $20,000.”
Kinser is a board member of her local Massachusetts Chapter of HDSA. She is involved in attending meetings quarterly and helping with the HD walks around the state, Education Days, as well as many other events that the chapter sponsors.
Kinser recently took Meaghan’s service dog, Dixie, and finished putting her through a pediatric training therapy class. Dixie passed the test so that she is now an official K-9’s for Kids therapy dog.
Kinser is an incredible woman. One can only imagine how immensely hard it would be to lose your husband and your little girl only two months apart from each other. Kinser is a survivor and is taking what she has learned to help others. We can’t wait to see what the future holds and the changes that will be made because of the “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation.”
Celebrating All the Patient Advocates
Help 4 HD International would like to thank all the Huntington’s disease patient advocates out there. Without you, change will not happen. So keep fighting, my friends, for the next generation and all the generations to come. Let’s hope that one day our efforts become a paragraph in a history book of “how they used to live before they found the cure for Huntington’s disease.”