Advocate

Crowd of Advocates

Tremor does not discriminate, is worldwide, and knows no age barrier. Gender gap and geography are not obstacles in Shaking the World to Find a Cure. Generations Millennial (Y), X, Baby Boomers, Silent, the Establishment and not yet born inherited or sporadic tremor generations are represented in the development and implementation of Tremor Action Network activities and programs. TAN is dedicated to advocating for the diagnosed and undiagnosed children, adults, and next generations affected by tremor.

Advocates are people, children and adults who have the capability to effect a cure for tremor. Advocates’ actions are essential to spread awareness of tremor by advocating for a cure through research. TAN’s advocacy agenda includes building a network of advocates to inform the public, government agencies and the health care industry on the universal needs of the tremor population. TAN pledges to promote collaborative advocacy through novel and creative activities.

Brain Awareness Week
TAN in partnership with the Society for Neuroscience (SfN) and Dana Foundation (DANA) since 2005 has accomplished much as a Brain Awareness Week (BAW) outreach partner. BAW is a national and international campaign, recognized by over 2800 partners in 82 countries. BAW offers an opportunity to focus attention on tremor within the broader context of the brain and brain research. TAN requests advocates to participate in Brain Awareness Week to increase local community awareness about movement disorders. BAW activities come in “all shapes and sizes.” TAN has partnered with state and federal officials, medical centers, community colleges, health and science fairs, newspapers, radio and TV stations to spread movement disorders awareness. It is estimated that 40 to upwards of 72 million people have some type of movement disorder.

The SfN challenges anyone to participate in the annual Brain Awareness Video Contest. TAN generates interest among our Brain Bee pool of teachers and students!

International Brain Bee
TAN assists teachers and their high school students with participating in the annual Local Brain Bee competition in the United States. The purpose of the Brain Bee “is an attempt to motivate students to learn about the brain, and to inspire them to pursue careers in biomedical brain research.”

American Brain Coalition
TAN is a member of the American Brain Coalition (ABC), a coalition for bringing together neurological and psychiatric organizations that represent interested patients, families, and professionals to collectively advocate for increased support of research that will lead to better treatment, services, and support. The organization is also pressing for a national commitment towards finding cures for individuals with disabling neurological and psychiatric disorders. “ABC hopes to achieve the same level of public awareness and support for diseases of the brain that have been realized by the American Heart
american-brain-coalition-logoAssociation for heart disease and the American Cancer Society for cancer. Only when the public understands how mental illness and diseases of the brain affect 50 million of their relatives, friends, and neighbors will we attract the level of support for research and care needed to prevent, control, and cure these diseases. Each ABC member has a responsibility to network with colleagues in their field so that ABC can achieve this level of awareness.”

TAN complies with ABC’s “request for responsibility.” TAN regularly attends the ABC spring and fall membership meetings, participates in ABC conference calls and ABC sponsored events, that include the Congressional Neuroscience Caucus Briefings. TAN attended the 2010 Member of Congress meeting in Washington, DC, and the 2011 and 2012 One Mind for Research symposiums in Boston and Los Angeles. TAN was awarded the first ABC Advocacy Challenge award. TAN features ABC articles in The TremorAction.org newsletter Spikes & Spasms, and proactively shares weekly ABC updates with tremor patient advocates.

Tremor Action Network was inducted as an ABC nonprofit member during the 2005 57th American Academy of Neurology (AAN) Meeting in Miami. Prior to the induction, TAN was on the ground floor of the ABC start-up in 2003 and 2004. TAN attended the 2003 Society for Neuroscience (SFN) Advocacy Workshop in New York City that was the catalyst for the evolution of ABC. TAN was present at ABC’s first meeting in conjunction with the 2004 SFN meeting in San Diego. On behalf of TAN, Kathleen Welker served on the ABC Strategic Planning Committee.

On February 28, 2013, the ABC Nominating Committee selected TAN to serve on the ABC Board. Tremor Action Network’s well known advocacy participation represents the Mission, Vision and Goals of the American Brain Coalition.

On May 1, 2014, the Chair of the American Brain Coalition’s Advocacy Committee, Mark M. Rasenick, PhD, invited TAN to serve as a member on the committee. The Advocacy Committee “has the opportunity to raise awareness among policy makers about the cause, impact, and consequences of neurologic and psychiatric illness in our society through education and advocacy efforts.”

American Academy of Neurology
Tremor Action Network is a nonprofit exhibitor at the American Academy of Neurology Annual Meetings. Beginning with the 2006 Meeting in San Diego, TAN has traveled to Boston, Chicago, Seattle, Honolulu and New Orleans to meet with the national and international members that belong to the Academy. TAN was on hand to exhibit at the AAN’s First Annual Brain Health Fair held in Hawaii. More than 1400 consumers attended the Fair.

Tremor Action Network promotes Neurology Now, the bimonthly AAN print and online 
publication that is available at no charge to individuals with neurological disorders. TAN is featured in Neurology Now’s Resources Central Assistance Directory. Numerous tremor patients, especially individuals without Internet access, depend on the Directory to contact TAN for tremor resources.

The American Academy of Neurology offers a patients and caregivers website, that includes but is not limited to in-depth information on more than 250 neurologic disorders, personal stories from Neurology Now, summaries of AAN Practice Guidelines, and the latest news on neurology.

The Movement Disorder Society
Tremor Action Network Board members have memberships in The Movement Disorder Society. Andrea Gardner, RN, TAN Director of Education, is a member of the MDS. Andrea’s article, “Web-based Survey: Essential Tremor Awareness,” was presented at the 16th International Congress in Dublin, Ireland. In addition to Ireland, TAN has exhibited at the MDS International Congress of Parkinson’s Disease and Movement Disorders in Chicago, Paris and Buenos Aires. Tremor Action Network enjoys and appreciates the interaction with Congress attendees who are more than willing to share interests and ideas.

Tremor Action Network Advocacy Awards

  • Life In Motion Congressional Letter-writing Campaign 2006
  • Certificate of Special Congressional Recognition 2008
  • American Brain Coalition Advocacy Challenge 2009

Tremor WatchdogsCongressman Scott Perry's staff

Be empowered to be heard! Nannette Halliwell and Kathleen Welker met with Nannette’s Congressman Scott Perry’s (PA-4) Legislative Director Marianne Myers, and Legislative Assistant John Drzewicki, on February 19, 2014. Nannette and Tremor Action Network were pleased to learn that Congressman Perry joined the Congressional Neuroscience Caucus on behalf of Nannette’s advocacy and family history with essential tremor.

 

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