Cure Huntington's Disease — The Fred Maher's Family Journey

About Melinda Maher

Family History

My father was diagnosed with Huntington's disease in 1994 when I was six-years-old. A few years prior my grandfather, his father, had passed away from a disease that was unknown at the time. This disease was later determined to be Huntington's Disease after some tests were performed. My Grandfather was one of four boys and out of the four of them two were "HD free". As far as we know, my grandfather passed the disease onto four of his seven children.

Over the years my father digressed because of the disease. While the disease progressed, he had mood swings and would later begin to lose muscle control. His balance was terrible and he twitched with slight chorea movements. In addition he had "no filter" which meant he spoke his mind no matter the appropriateness.

Hygiene Baskets

In eighth grade I decided to raise awareness and funds for Huntington's disease. I had been hearing about the Relay for Life and other fundraisers and I was fed up with other diseases fighting for a cure while I sat back and did nothing. At the time my father had been going to the Huntington's disease clinic at Columbia Presbyterian Hospital and I had been speaking with the social worker there. One of the most interesting facts that she told me was that HD patients who are very symptomatic become forgetful. It is common that unless their hygiene products are set out in plain sight they'll forget to brush their teeth or use deodorant.

After a lot of thinking I decided to put together hygiene baskets for Huntington's disease patients. As a thirteen-year-old in eighth grade this was a huge project. The Danbury News Times wrote an article entitled, "Daughter goes to bat for her disabled father" written by Robert Miller. The article talked about my efforts to raise awareness and my fathers debilitating disease. I had multiple drop boxes around my hometown and other surrounding towns.

The PTO of Burnham Elementary School in Bridgewater, Connecticut was really involved in the collection of hygiene products and baskets. At the end of the collections many of the elementary school students and parents helped to assemble a large majority of the baskets. The remainder of the baskets were put together by my church family at the Sherman Congregational Church. It was really rewarding to see that other families and children felt strongly about my cause and were determined to see me succeed.

In the end we had over 100 hygiene baskets. I sealed all the baskets with plastic wrap and attached a little note reminding all the patients that they are loved. Years later, I still am getting told how touching the note to the patients was.

In September of 2001, weeks after the 9-11 attacks, I went to Terrance Cardinal Cooke Health Care Center in New York City with my mother and one of her friends. It was there where I personally hand-delivered about ten baskets to patients who were able to successfully communicate with me. We left enough baskets for the other patients in the forty patient Huntington's disease unit.

While I was personally handing out the baskets to residents I was very nervous, I had never seen anyone as sick as the patients at the care facility and it was very disconcerting. As I look back today I can still remember a couple of the conversations I had with patients. One woman asked me if I thought she smelled. Also a man followed us around the unit just so he could hug my mother and tell her that "You must be very proud." All of the patients who I spoke with at TCC were very thankful and loving.

Over the next couple of months my mother brought the remaining sixty plus baskets to the clinic at Columbia Presbyterian Hospital; the clinic where my father went. The clinic handed out the baskets to all of their patients and again the families were very grateful for the generosity. Although this was a small start to my efforts for Huntington's disease it was a heart felt project that proved to the patients that they were loved.

High School

When I started high school my activities for Huntington's disease ceased because I was so focused on being a student. My father continued to get sicker. He was placed in a nursing home in Bridgeport, Connecticut during the fall of 2002, that December we moved him closer to home into The Kent, a care facility in Kent, Connecticut. His new residence was only 10 miles from our home, which made it easy and convenient to visit him.

In the spring of 2004 my mother, brother and I went to St. Louis, Missouri for the HDSA National Convention. This was my family's first convention and we were all very overwhelmed with the wealth of information we were provided. Seeing individuals who were symptomatic as well as children affected by the juvenile form was difficult. I did not know there was a juvenile form until I met Karli Mukka that year at the convention. I was so moved by Karli and her story. Over the years I learned more about her and her family.

2006 High School Senior Project

As a senior I was required to do a year long Senior Project. At the start of the year I wasn't sure if I wanted to do a project working with kids or a project about Huntington's disease. At a very young age I knew I wanted to be a teacher and I had been working in my high school's preschool R.E.A.C.H. program. After really thinking it through I decided to focus on Huntington's disease for my Senior Project. I knew as a senior in high school I wouldn't have many opportunities during college to put together fundraisers.

I'm a strong believer in the saying "Go Big or Go Home!" and I had decided to go big. For my project I wanted to raise awareness and funds. To do this I started putting together a school wide assembly that students and teachers were encouraged to attend. The goal of the assembly was to educate people at my school about Huntington's disease and how it is a "family" disease. I informed everyone that HD is always on my mind because someday I could develop the symptoms myself. So every twitch of a muscle, dropped pen, and clumsy moment in my mind is the beginning of the symptoms of Huntington's. However to someone who is not affected by HD all these actions are immediately linked to lack of sleep, a bad day or simply a twitch of a muscle.

I met my goal of raising funds by putting together two types of fundraisers. The first one was small but creative. I sold blue carabineers with "Cure HD" engraved in them for $5. The carabineers were a big hit and I was almost sold out of 250 by the end of the school year. The larger scale fundraiser that I held was a benefit dinner for Huntington's disease. I originally thought I could hold a pasta dinner or something similar but I felt that was too generic. In the end I decided to hold a semi-formal benefit dinner.

I had a lot of trouble getting things passed by the school for this part of my senior project. I was told multiple times that I was trying to do too much. I was questioned on the price I wanted to charge for tickets. I said I wanted to charge $30 and I ended up having to fight for the right to charge that price. I was told I would never sell the 160 tickets I wanted to sell and that the dinner would not be a success.

The benefit dinner was a lot of work but I knew all along that in the end if would pay off. I had to personally book the reception hall, DJ, cook, and videographer. I was definitely going big. I typed up press releases and posted fliers. I appeared on the cover of the Danbury News Times the week prior to the benefit dinner. The article was a major help in raising awareness and ended up increasing ticket sales.

On April 9th, 2006, I held my first annual family benefit for Huntington's Disease. The night was a huge success. When my senior project teacher arrived she walked in and told me how gorgeous the hall looked. She even admitted that she was picturing it as a back yard barbeque but to her surprise the hall was decorated well enough for a wedding reception.

Two of HDSA's representatives attended the dinner and presented me with a certificate which recognized all my hard work. They also informed me that HDSA had a donor who was willing to match the funds I raised 2-to-1. At the end of the night I had raised $12,105. I donated $2,105 to the Hereditary Disease Foundation and gave the other $10,000 to HDSA to be match 2-to-1, making a grand total of $32,105. At the Huntington's Disease Convention that summer I was awarded the HDSA: National Youth Award for all my hard work.

Annual Dinner & Dad (Post High School)

With the dinner being such a big success, my family and I decided to turn my senior project into an annual event in order to continue raising awareness and funds for Huntington's research until there is a cure. Another major reason we turned it into an annual event was because my father was so excited about it. In fact, he attended the first three dinners. At times I thought the dinner is what he lived for and I'm glad I was able to provide him with those memories. Every time I visited he would ask me when his party was or how much longer until the party. He loved the dinner so much that he was doing P.T. in order to keep his leg muscles active so he could dance.

At the first dinner he danced with my mom to their wedding song. At the second dinner my dad and I danced to Tim McGraw's, "My little Girl." At the third dinner we also danced together but I couldn't tell you the song we danced to because the whole time my dad had me laughing as he chased me across the dance floor trying to step on my feet. By the end of the song I was basically in a split on the dance floor. He was a bundle of laughter and joy. The dance portion of the event hasn't been the same since my father passed away.

After a long summer in 2008 my father lost his battle to HD on August 3rd, 2008. I will never forget that weekend. The year after my father passed away we all had a really hard time at the dinner. I created a slide show of pictures of dad through the years. It was a great way to remember dad and show people a bit of who he was and how much he loved his family.

As researchers continue to search for a cure, my family and I will continue to raise awareness and funds in an effort to make this the last generation with Huntington's disease.