Month: June 2016

HopeNET is continuing to contact members of Congress to achieve specific goals regarding ET. More than a year and a half ago, a member of one of our support groups said that she had had her yearly Medicare examination. She said that there had been no mention of ET. She felt that there should have been because falls are the largest cause of injuries among the elderly. I asked Dr. Fatta Nahab to draft a letter – from a Congressman to the Director of CMS asking that attention be given to ET and falls. We then met with a Legislative Assistant (LA) for Healthcare for a Congressman in January 2015. We explained that we were requesting the Congressman’s help and gave her the draft. 

Nothing materialized then so we revisited the issue in December 2015. We met with the LA for a different Congressman, Maryland Congressman Chris Van Hollen. We had a very good meeting with her. During the conversation, the “Essential Knowledge Gaps in the field of Essential Tremor” conference held at NIH in May 2015 came up. I explained that a major issue at the conference was the need for a better understanding of Essential Tremor. After discussing our request with Congressman Van Hollen, she called me back to say that they wanted to shift the direction of the letter to asking NIH to focus on getting a better understanding of ET.

There were delays in sending the letter, primarily because the Congressman was in a sometimes bitter race to win the Democratic nomination for the Senate. In late April, he won the primary. Given Maryland politics, he will be the next Senator.

Dr.Claudia Testa provided invaluable assistance in that she provided the LA with a draft and then worked with her to come up with the final version.

Please find attached the letter that was sent:   

Link to PDF of Essential Tremor Letter to NIH June 2016

Peter

Meeting by Amanda.
“Keep Your Brain Sharp”

Use it or lose it. Your body will follow.
1. Make 15 minutes of your day about learning something new.
2. Use puzzles, crosswords, card games.
Eat right to stay bright.
1. Exercise, nutrition, chewing gum reduces stress.
2. Citrus wakes you up.
3. Lavender, rose, fragrances that calm you.

Jim recommended a book available at your local library called Green Pharmacy. The group agreed that we need to work on nutrition and its value. George, as a new member to our (HopeNET) group as well as to the Facebook Essential Tremor Awareness Group, was delighted and feeling he was not alone. Next month we discuss acupuncture. Once again we realized we are all the same but different with our ET. Mostly we are delighted to be in a group to discuss our daily situations. And having true compassion for each other.

Thank you again AMANDA for your knowledge and down to earth discussions. I am thankful to be in an ET Group. Best of the rest of the evening,

Kathy Forte