Advocacy of 1

Advocacy of 1

Tremor Action Network has appointed Nannette Halliwell to the position of Blog Editor. Nannette will manage the publishing as well as contribute content to the blog. She has great organizational and communication skills. 

On February 19, 2014 TAN had the pleasure of working five hours with Nannette, advocating for essential tremor   (ET) on Capitol Hill. She shared her family history of inheriting ET, grabbing personal attention from every House of Representative staffer she met with. TAN is proud of Nannette’s advocacy achievements, including but not limited to advocating with both the House and Senate. She was instrumental in getting House Representatives (4PA) Scott Perry and Joe Pitts to join the Congressional Neuroscience Caucus. She has established a relationship with Senators Pat Toomey and Bob Casey of Pennsylvania. Nannette is also working with majority whip PA State Representative Stan Saylor.

TAN is grateful for Nannette’s advocacy, and is delighted to feature her family story. Bh_ATeFCMAAXT-F

“Loretta Ellis Geddes, born in 1886, lived in Panama while her husband Thomas worked on building the canal. She raised seven children between Panama and New York City during the depression. She spent every day taking care of her husband, children, and grandchildren. What Loretta never did was eat dinner with her family, have refreshments at her daughter’s engagement tea, eat or drink anything at any of her children’s or grandchildren’s weddings. She had essential tremor. She had it from the time she was a teenager. No one knew what it was or what caused it.

Loretta’s children inherited essential tremor. Her oldest son, Albert, at age 20 as construction worker in New York City, never knew why he could not keep his hands steady. I as Loretta’s grandchild inherited it. The first explanation from a neurologist was the shaking was caused by a brain tumor. One neurologist later, essential tremor was diagnosed at age 39. Loretta’s great-grandson, my son, developed essential tremor at age 14.

The only positive advance in four generations afflicted with essential tremor is that now we as a family know—we either have essential tremor or at least carry the gene to pass it on to our children. There are no drugs developed for essential tremor. There is very little funding for essential tremor.

Essential tremor Awareness has to start now. It has to start with my family’s story getting the attention of people who can make a difference in legislation or funding. You can help in a very simple way. Any time anyone mentions movement disorders, ask them if they are including essential tremor in the discussion. If they are not, ask them why. Essential tremor will not get the funding it needs for research unless each one of us educates someone on what essential tremor is and how devastating it can be.

Please help me advocate for better research, better drug development and better awareness. Let my generation be the last where essential tremor is not given the attention it needs as a Movement Disorder.”

Nannette Halliwell

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