Running to Make an Impact

The location was the U.S. Naval Base in Guantanamo Bay, Cuba. Second Class Petty Officer Peder Nelson had just finished his shift as a block guard at the detention facility. It was his first 90 days on the island and there was a “no alcohol consumption” policy in place for everyone working there. As he filled out a log sheet, a senior officer was watching, and approached Peder. Then the inquiry began.

“When was your last drink?” he asked.

Taken aback, Peder realized the officer had noticed his shaky hands. It was an educational moment for the officer as Peder explained that his shaky hands were not related to alcohol withdrawal, but rather a condition called essential tremor (ET).

Peder Nelson photo
Peder Nelson with his son, Davin.

This type of assumption is all too common for people with ET. Alcoholism, drug abuse and nervousness top the list of assumptions people make when they see someone’s shaky hands, head or limbs – all symptoms of ET. Because of this, people afflicted often try to hide it. They feel self-conscious, sometimes embarrassed, and often they let it inhibit them. Peder has felt all of these emotions and more.

But this fall, the 39-year-old Navy veteran from Sellersburg, IN will push past his ET, while raising awareness to the public. Peder will compete in the 6th annual Cloudsplitter 100 set for October 12-13. Cloudsplitter is a 100-mile ultramarathon taking place in the heart of Central Appalachia in the Cumberland Mountains of Virginia.

Throughout his training and his running, he will be raising money for the International Essential Tremor Foundation (IETF). Peder has set up a FundRazr site where people can make pledges to sponsor him. So far, he has raised about $2,000.

Peder has dealt with ET most of his life, but was formally diagnosed at age 20. He saw his diagnosis as a weakness and decided to get in shape. So he began running. What many don’t realize is that exercise actually make tremors temporarily worsen, but for Peder it’s worth it.

“Exercise is a really good way to feel confident about something and to feel competent about something,” Peder said.

Cloudsplitter participants are allowed 40 hours to complete the 100-mile race course. The record holder for the course did it in 22 hours. Peder expects to finish somewhere between 22 and 40 hours.

Added to the 100-mile challenge, the course will include elevation changes totaling 52,000 feet, along with rugged terrain, which includes crossing water in some areas. He will have help toward the end of the race. Many family members and friends have volunteered to “pace” him. This means they will run alongside him and cheer him on and provide that mental support needed to keep going as he gets closer to the end. He expects to be running on adrenaline that last part of the race, once the physical exhaustion sets in and lack of sleep takes its toll.

These thoughts might hinder someone else, but Peder is up to the challenge. It will be his time to shine a light on essential tremor.

Visit Peder’s FundRazr page online to learn more or to pledge your support. Or donate through through the IETF website.

Research Brings Hope for a Brighter Tomorrow, and World Without Essential Tremor

We sometimes take for granted the vast history of medical research and its impact on human ailments and diseases. Most people have heard of polio and tuberculosis, which today are easily preventable with a vaccine. Organ transplants extend life for many and the pacemaker regulates the heart’s rhythm for people with irregular heartbeats. Physicians can remove cataracts and cancerous tumors, and use artificial insemination to help couples conceive.  And surgical options for essential tremor (ET), including focused ultrasound and deep brain stimulation, have enhanced the quality of life for thousands. None of these would be possible without medical research.

The International Essential Tremor Foundation (IETF) knows through continued medical research, there will one day be improved treatments and possibly a cure for essential tremor. So each year, we continue to fund research projects to address the nosology, etiology, pathogenesis and other topics relevant to essential tremor. Through promoting and awarding research grants, we also know we can stimulate inquiry into essential tremor (ET) by leading scientists.

IETF Research Appeal Graphic 2019

July is a time when we focus on essential tremor research and work to raise money for research grants. Since 2001, the IETF has dedicated more than $800,000 toward essential tremor research and we are not done yet.

This year, we presented a $25,000 research grant to Dr. Adrian Handforth with The Veterans Affairs Greater Los Angeles Healthcare System. His research project is titled, Evaluation of an a6ßy2 GABA Receptor-Specific Drug as Potential Therapy. It will explore the potential of developing a drug that mimics how low doses of alcohol can suppress the effects of tremor, but with more selectivity of molecular targets to try to avoid adverse effects found with other medications used for management of essential tremor.

Please consider supporting our “Shine a Light on Essential Tremor Research Campaign” this month. Watch for a special letter in your mailbox outlining how you can help. Or go online and make a donation.

Research provides hope for all of us, and means a better and brighter future for the next generation. Perhaps our scholarship recipient, Deirdre, summarized it best when she said:

New and ongoing research for ET gives hope to us young people. Even though our conditions may worsen over time, there are also so many ways that modern medicine can help us live our lives normally and we all need to work toward that goal together.”

‘Tis the Season of Giving and Understanding the New Tax Laws

LET YOUR GIFT BE YOUR LEGACY

December is traditionally a time of giving. It’s the holiday season where gifts are exchanged and people reach out to help others, including organizations that do good in the world. Many charitable organizations receive their largest contributions in December.

While most charitable contributions are not motivated by tax write offs, this incentive has been engrained in society for the past 100 years. It was 1917 when charitable giving was approved as a tax deduction. The War Revenue Act of 1917 was adopted shortly after the US entered the war (World War I). The idea behind the act was to provide support for charities who otherwise might not survive the war.

Exactly 100 years later, in 2017, the Tax Cut Jobs Act was passed, changing the landscape for charitable giving. The new law reformed individual and corporate income tax. It increased the standard deduction and family tax credits, and eliminated personal exemptions, making it less beneficial to itemize deductions. What does all this mean if you are making charitable contributions? And how can you still give and save on your taxes?

Know the Rules
Understanding the ins and outs of the new tax laws can help you set goals. Most importantly, know what tax bracket you are in and the standard deduction amount. Here are the tax brackets for 2017 and 2018 so you can compare the changes.

Try Bunching
The new law doubled the standard tax deduction, which means fewer people will probably itemize their taxes. But, you can only make deductions if you itemize your taxes. Try to take advantage of itemizing by consolidating charitable donations. So instead of giving smaller amounts for two years in a row, give two or three year’s worth of donations in the same year so the gift is enough to deduct.

Consider a Donor-Advised Fund
A donor-advised fund is a charitable investment account established specifically to support a charitable organization you care about. It allows individuals to make a charitable contribution and receive an immediate tax deduction of up to 30%, then recommend grants from the fund over time. Direct donation of publicly traded securities is one of the most common ways to set up this type of fund.

Know the Value of Your Gifts
Most people give to a cause or charity because they believe in the purpose and the mission and want to be a part of it. Don’t lose sight of this. The gifts you give may be deductible in a given year, but their benefits can be life-changing for the cause you are supporting. Imagine knowing that because of you and your support, research was conducted that led to a cure for essential tremor. Let your gift be your legacy.

Learn More
Everyone’s personal finances are different and tax laws can be complicated. For more information check with your financial advisor or tax consultant to create a plan that works best for you.