Golf for HD raises funds for Huntington's disease research, patient programs

Imagine having the symptoms of ALS, Parkinson's and Alzheimer's all at the same time.

That's what it is like for people who have Huntington's disease.

While symptoms of HD may vary in each individual, there are common traits in people who have the marker for the genetic disease.

According to Huntington's Disease Society of America's website, first, there may be difficulties remembering and staying on task, as well as mood changes like depression, anxiety, irritability, anger. Most people develop movements of the face and limbs, which they are not able to control.

Because of these uncontrolled movements, a person with HD may have trouble walking or balancing. They will eventually lose the ability to go to work, drive a car, and even manage simple household tasks. Over time, they will develop difficulty with speaking and swallowing, and movements will become slow and stiff.

According to the website, people with advanced HD ultimately succumb to pneumonia, heart failure or other complications.

As if the slow deterioration of their mind and body isn't bad enough, the added devastation of this disease is knowing there is a 50/50 chance of passing it on to their children.

There is no cure for Huntington's disease, but the Huntington's Disease Society of America works every day to fund research to find that cure and to help families navigate the trials of living with HD.

To help its cause, Golf for HD will take place Sept. 12 at Old Orchard Country Club, 700 W. Rand Road, Mount Prospect.

Wayne Galasek, who serves on the board of the Illinois Chapter of HDSA, talks about Huntington's disease and the upcoming golf fundraiser.

Q: What is Huntington's disease? Give a brief overview of the organization you serve.

A: The following was taken from the Huntington's Disease Society of America website, hdsa.org.

Huntington's disease (HD) is a brain disease that is passed down in families from generation to generation. People with HD have a small error in one gene called huntingtin. Over time, this error causes damage to the brain and leads to HD symptoms.

HD causes deterioration in a person's physical, mental, and emotional abilities, usually during their prime working years. Most people start developing symptoms during adulthood, between ages 30 and 50, but HD can also occur in children and young adults (known as juvenile HD or JHD).

HD is known as a family disease, because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. There is currently no cure or treatment which can halt, slow or reverse the progression of the disease.

However, there are treatments and interventions that can help to manage HD symptoms. A medical professional with expertise in HD may prescribe medications to ease anxiety and depression, help with troublesome behaviors, and calm uncontrolled movements.

A psychologist or social worker can provide individual or group counseling. Physical and occupational therapists can work with patients and families to develop strength, move safely, and adjust the home environment and activities, as needed. Speech language pathologists and nutritionists can help with communication, eating and swallowing safely, and combating weight loss.

In 1967, Marjorie Guthrie launched an all-out assault on the disease that would soon claim her husband, music legend Woody Guthrie, and threatened their three children.

She and five other volunteers succeeded in forming the Committee to Combat Huntington's Disease (CCHD), which was incorporated in the state of New York on Sept. 18, 1967, as a nonprofit. On Nov. 4, 1983, CCHD became the Huntington's Disease Society of America.

The Huntington's Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington's disease. From community services and education to advocacy and research, HDSA is the world's leader in providing help for today and hope for tomorrow.

Q: Where do the majority of your donations come from?

A: Donations to both HDSA and the Illinois Chapter come from a variety of sources: individuals with HD, families who are at-risk, local/regional/national businesses, caregivers, and the general public.

Q: How many people per year do you serve?

A: This is a broad question, but if you include patients, family and children at-risk, caregivers, etc. (those directly affected or on the front line of care), we probably serve close to half a million people in the U.S. alone. Illinois has one of the largest concentrations of patients and medical support, aka Centers of Excellence (COEs), in the country.

Q: What are some of your programs?

A: HDSA and its supporting chapters, COEs, worldwide medical research for a cure and fundraising include all of the following:

Advocacy

Reaching out to state and federal legislators for legislation that identifies HD and provides both social services and financial relief. For example, Congress is currently debating the HD Parity Act, which would waive the 2-year Medicare waiting period, as well as waiving the 5-month waiting period to access Social Security Disability Income (SSDI). HD has not been recognized as a covered condition like other neurodegenerative diseases such as ALS.

Centers of Excellence

The HDSA Centers of Excellence provide an elite team approach to Huntington's disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD, and who work collaboratively to help families plan the best HD care program throughout the course of the disease.

Events and public awareness.

Both HDSA and the Illinois Chapter host a huge number of educational/fundraising/advocacy/etc. throughout the year.

Research

HDSA funds a variety of research projects seeking a cure, as well as medications/treatments for the relief of HD's symptoms.

Q: Tell us about Golf for HD.

A: Golf for HD is a local event to raise money for a medical cure for HD. All monies (over the cost of golf) will be sent to the Illinois chapter, which then forwards it to HDSA, the national chapter, which donates to a variety of research projects.

The second annual Golf for HD will tee off at noon Sunday, Sept 12, at Old Orchard Country Club in Mount Prospect.

This will be a foursome scramble (using best ball - all players take all shots) with a shotgun start to speed up play. Players of all levels and ability are encouraged to participate.

Prizes for lowest and highest foursome scores, women's and men's skill awards, and a healthy amount of goofy awards for players who demonstrate unusual talents (such as the Sand Hole award for the player who consistently hits the bunkers).

We also will have fun challenges at various holes to test individual competitive athleticism among each foursome.

You can support us in a lot of different ways. We are reaching out for golfers, golfer goody bag items, direct donations, silent auction/raffle prizes and anybody who wants to help on Sept 12.

All corporate/business donations will enjoy seeing their logo on our website!

Lunch and two drink tickets are provided in your fee. There will be a post golf prize awards ceremony and raffle/silent auction, served with snacks and cash bar. Nongolfers are encouraged to participate in these events.

Cost ranges from $140 to $540, depending on how many people are in your party.

Golf registration, personal or business donations, and contact information can be made at www.golfforhd.com.

Q: How can readers help if they can't participate in the event?

A: We recognize that golf is not for everyone. Interested readers can make direct donations through the website - fully tax deductible. We are also seeking prizes/gifts/raffle/auction items for the post-golf fundraising. If you have something you'd like to donate, email wgalasek@aol.com.

Q: What else would like readers to know?

A: HD is an inherited, neurodegenerative disease that effectively kills the human body, cell by cell, muscle by muscle, organ by organ, starting in the brain.

HD is the ultimate family disease - it is only passed down generation to generation through DNA. It is not something you get through environment, work, habits, lifestyle or social contact. Every child of a parent with HD has a 50/50 chance of inheriting the mutant gene that causes the disease.

HD was one of the first diseases identified under the Human Genome Project (HGP), which started in the late '80s and was completed just this last May. The goal was to identify and map the entire human DNA from a structural and functional standpoint.

We know where on the DNA the mutant HD protein is, we know what it does, and a number of global research projects are seeking ways to prevent it from fulfilling its deadly mission.

If they can cure HD, it will also open doors for dozens, if not hundreds, of other similar genetic disorders.

The vast majority of HD patients are cared for at home by their family, and their ability to complete even the simplest activities of daily living - eating, bathing, dressing, mobility, continence - are severely compromised.

Sadly, not only are physical abilities compromised, but the patients also suffer from dementia/Alzheimer's, other cognitive failures and often experience psychotic outbursts.

We are close to a cure, and as I say at every fundraising event, we don't know which dollar, from which donor, participating in which event, given to the right research team will develop a cure. Every single dollar we raise is important, not only for the HD community, but also patients and families the world over struggling with similar, fatal diseases.

Thank you for your consideration and support.

• • •

Golf for HD

What: Golf for HD raises funds for Huntington's Disease Society of America

When: Noon Sunday, Sept 12

Where: Old Orchard Country Club, 700 W. Rand Road, Mount Prospect

Cost: Ranges from $140 to $540

To register or make a donation: www.golfforhd.com

To donate prizes/gifts/raffle/auction items: Email wgalasek@aol.com