Pennsylvania girl raises money for a rare juvenile disease
Monday, January 07, 2013
Nine-year-old Virginia Buck does not ask for much for herself. In fact, the only thing she really asks is that you try and understand what she and other kids like her are going through. Virginia is living with Juvenile Huntington disease, a fatal, neurodegenerative genetic disorder that causes problems with walking, talking, thinking and behavior.
She might also ask you to donate a few pennies for her water-cooler jug, which she fills with money and sends to the University of Iowa Huntington’s Disease Society of America Center of Excellence for Juvenile Huntington disease research. The Tyrone, Pa. girl says she does this to help other kids with Juvenile Huntington disease, her friends from around the country, and help find a cure for those kids.
The loose change will add up, she says; it will mean something. It means something for the kids who need research to find a cure for this disease they have that makes their bodies behave differently than other kids or makes them take longer to say what they are trying to say and makes them feel misunderstood.
Virginia’s simple wish to fill her water jug with pennies led to a day-long event that raised a wealth of awareness of Juvenile Huntington disease and nearly $2,400 for Juvenile Huntington disease research that is urgently needed but underfunded, according to Jane Paulsen, PhD, professor of psychiatry, neurology, psychology and neurosciences in the University of Iowa Roy J. and Lucille A. Carver College of Medicine and co-director of the University of Iowa Huntington’s Disease Society of America Center of Excellence.
Diagnosis Leads to Determination to Help Others with Disease
Virginia’s father Michael is in the late stages of adult-onset Huntington disease. Virginia was diagnosed in 2008 with Juvenile Huntington disease, a rare, more rapidly-progressive form of Huntington disease that is often fatal within 10 years of onset. Both Huntington disease and Juvenile Huntington disease are caused by a genetic mutation or repeat in the Huntington gene, and those with Juvenile Huntington disease have a much higher repeat count in the Huntington gene genetic code. An article in PLOS Currents Huntington Disease says only about five percent of all Huntington disease cases are Juvenile Huntington disease. Virginia is most impacted by the emotional and cognitive symptoms of the disease, says her mother Lisa Buck. Children with Juvenile Huntington disease often also experience rigidity, involuntary movements, and seizures.
Shortly after her diagnosis, Virginia told her mother she wanted to make a difference and help find a cure for Juvenile Huntington disease. She decided to start collecting the pennies that many people don’t even think about or would rather leave behind.
"People don’t look at [pennies] as valuable, but to her, they mean something," Lisa Buck said. "And in a lot of ways, she feels like those pennies that people don’t want or understand. She wants to make people know that pennies do mean something."
Impressed with the sheer size of an empty 5-gallon water jug, Virginia decided it would be her goal to fill as many as she could with pennies and donate the money to fund Juvenile Huntington disease research. The Buck family found out that the University of Iowa Huntington’s Disease Society of America Center of Excellence was conducting Juvenile Huntington disease research, one of the few institutions to do so, and decided to send the money collected far away to Iowa. Virginia started collecting the coins on her own, placed cans in local stores, and even had a friend in Michigan who also has Juvenile Huntington disease set up a PayPal account so she could collect pennies online.
Virginia met Ryan Myers, 18, when she was an honorary cheerleader for a local high school team that Myers helps coach. The two decided to raise more money by holding a fundraising event, and Virginia suggested they hand out coffee. Myers, who said he was inspired by Virginia’s positivity and desire to help others in an article in the Centre County Gazette, got the word out about the "Coffee for a Cure" event and recruited volunteers. Virginia told everyone she encountered about the event, Lisa Buck said, and even spent some of her own money to buy sugar packets that didn’t get donated.
Thousands Come to Donate and Meet a "Caring Young Lady"
On a chilly November 13, Virginia, her family, Myers, and a team of volunteers stood in front of The State Theater in State College, Pa., for 10 hours, handing out coffee and collecting donations. Those in attendance say the flow of people stopping by to get their caffeine fix, learn about Juvenile Huntington disease, talk to Virginia and contribute to her cause never slowed.
"Especially with it being a freezing-cold day, I never thought in my wildest dreams there would be so many people who wanted to meet Virginia," said her mother, Lisa Buck, who estimated at least 1,500 people stopped by.
Katie Moser, a former president of the Huntington’s Disease Society of America’s National Youth Alliance and a well-known Huntington disease advocate who herself tested positive for the Huntington disease gene mutation, heard about the event on Facebook and decided it was well worth the two-hour drive to meet Virginia and show her support.
"Coffee for a Cure" was a hub of endless activity, Moser said. People would stop by early and return again later with more people. Several local newspapers and TV news stations covered the event. And throughout, Virginia was there, with a smile on her face, telling people about Juvenile Huntington disease and that even if they just donate a penny, it will help.
"I don’t know many kids her age who could have been there all day, especially in the cold," Moser said. "She’s a wonderful and caring young lady; very inspiring. I enjoyed getting to know her and hang out with her."
Not only did they meet strangers who came by to donate and learn about Juvenile Huntington disease, but the Buck family also met several local Huntington disease and Juvenile Huntington disease families that had no idea anyone from other Huntington disease families lived nearby, Lisa Buck said.
"Many of the families had never met anyone else who knew about Huntington disease and wanted to connect by email or become Facebook friends," Moser said. “They were able to share stories, resources and contacts."
Lisa Buck said her daughter is amazed and grateful for the positive reaction from the community. It really put the light back in Virginia’s eye, she says, which has been amazing to see. Weeks after “Coffee for a Cure," Virginia still speaks of it with much enthusiasm.
"It was awesome," Virginia said. "We raised a lot of money, and I met more people with Juvenile Huntington disease."
Donation Will Fund Efforts to Learn More About Juvenile Huntington Disease
The amazing effort put forth by Virginia to help fund Juvenile Huntington disease research at a place far away from her home has inspired the researchers at the University of Iowa Huntington’s Disease Society of America Center of Excellence, Paulsen said. They produced a YouTube video of thanks to show their gratitude.
"We are so very proud of Virginia’s efforts," Paulsen said. "To know she’s out there raising money and telling people about Juvenile Huntington disease motivates us to do more."
The funds raised will support research like Paulsen’s Juvenile Huntington disease Natural History Study, which attempts to learn more about the disease and to improve tools to follow the course of Juvenile Huntington disease by collecting data from young participants with Juvenile Huntington disease. It’s important to have tools and assessments specifically for Juvenile Huntington disease, Paulsen says, since the disease presents different symptoms than the more extensively-studied adult-onset form of Huntington disease. Once those tools are developed, they could be used both to provide clinical care as well as to evaluate the effectiveness of any future treatments for Juvenile Huntington disease during clinical trials.
"We need to remain focused on this devastating disease that impacts these kids like Virginia," Paulsen said, "so we can make life better for them."
In many ways, that’s what these fundraising efforts are all about for Virginia: helping other kids with Juvenile Huntington disease. Kids that she’s met, but also kids she doesn’t even know and may never meet, who will benefit from Juvenile Huntington disease research years from now.
Virginia knows the impact the disease has had on her dad and on her friend in Michigan. She has had other friends through Facebook that have lost their lives to Juvenile Huntington disease. Lisa Buck says her daughter understands that as it stands, there is no cure for her, either. But Virginia’s goal is to help someone else if she herself cannot be helped in time.
It’s difficult to find the words to describe that level of selflessness from a nine-year-old, but her mom does.
"It makes me one proud mother, very proud, but in the same sense, it hurts," Lisa Buck said, pausing for several seconds at the thought of her daughter’s cruel prognosis. She continues.
"She has said to me that whenever she passes, she wants me to please continue the fight for funds for research," Lisa Buck said, "and I have given her my word that I will do whatever I can for that." She pauses again.
"To me, Virginia is my hero. She has taught me more than I could ever teach her."
Story Source: University of Iowa Huntington's Disease Society of America Center of Excellence
Media Contact: Sean Thompson, 319-384-4094