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Support sought for US Bill – update

Sunday 13 May 2007

Nevada LegislatureFurther to our earlier report on a call to support a US Bill for funding of the Nevada CFS Research Center, CFS Phoenix’s Cort Johnson has sent us another message.

Here is the new message from Cort:

Again I apologize for being intrusive but we now have e-mail addresses that can be used to contact Nev legislators about the CFS Research/Treatment and Education center in Reno. E-mails are the only way people outside the US can communicate on this issue and give CFS patients inside the US another way to make a difference. Four and a half million dollars is not alot of money in the grand scheme of things. I’ll bet Nevada legislators don’t get a lot of e-mails from people in Australia or New Zealand or Turkey expressing concern about a small bill hitting their desk. I’ll bet that would really reinforce what a special project the Neuroimmune Institute is and how much need and demand there is for it.

Please read the letter from Annette Whittemore, the co-founder of the Center, and her daughter Andrea below...

Letter from Annette and Andrea Whittemore about the Nevada Institute for Neuro-Immune Diseases:

Dear Family and Friends,

We need your help! The appropriation bills to help build the Institute and to finance future operations will soon be heard by the Nevada Legislature. As they weigh the many requests for money, they need to know that this funding will make a real difference in your life and that we need the state to fund this building and support our vital research. Nothing is more important than for our supporters in the Legislature to hear from the people who stand to gain the most from this investment in our health care system.

The bills are AB 316 and AB 500. They each aim to do the same thing – support the building of the Institute for Neuro Immune Disease at the University of Nevada, Reno, for the treatment and research of CFS, Fibromyalgia and other neuro-immune diseases. The proposed budget also includes $1 million in operating support, the other critical component of funding the Institute.

The timing of this campaign is critical and we need you to send letters and call these legislators this week. When the hearing is scheduled, we will let you all know so you can plan to attend, or send another round of emails to the members of the committee. Again, we will include the names and addresses you need then.

Below, you will find a letter you can customize, or send as is, whichever you prefer. The names, email addresses and office phone numbers for key legislators are found below. You should be able to click on the link, and cut and paste your letter into the email. Be sure and include your name and contact information. Your representatives need to hear from you, your family and your friends.

Here are a few bullet points to think about when writing your mail: Writing a simple letter that includes a few of these points would be incredibly helpful.

Thanks for your crucial role in our campaign to make the Institute a reality. Your letters, emails and phone calls are the constant support of our dream!

Sincerely,
Annette and Andrea Whittemore

We need to educate more doctors willing to treat such a difficult and complex disease.

Tell them how long you’ve been ill and how many doctors you’ve seen without results.

Tell them how this disease has caused you to be isolated from those you love.

We have a chance to do something unique in Nevada, for this state’s patients and those millions in the US and around the world who have even fewer resources.

Supporting the Institute is a great way to build the University of Nevada’s research reputation by organizing it around patient needs and to bring more federal research dollars to this state.

We need to stop the cycle of chronic disease that keeps people from working and living a productive life.

With better treatments, we can reduce the burden on families who have to care for patients with little or no medical support.

We need to find a way to help the thousands of patients with these chronic disease find real answers for treatment, care, cure and prevention. Let them know why you had to send a form letter, if you are too ill to write your own letter, due to the neurological problems that you have had since developing this disease.

And let them know that this is a true partnership with the Medical School and that our researchers and caregivers will be working alongside their University colleagues to advance the missions of both organizations in ways we couldn’t achieve alone.

Please fund AB 316/AB 500 and the operating funds for the Institute. Your investment will be repaid many times over!

Here are the names and addresses for the key legislators. Please send one to each and address them with their titles as indicated below. For the Subject line, Use: Chronic Fatigue Funding and AB 316/500.

Speaker Buckley

bbuckley@asm.state.nv.us

775-684-8537

Chairman Arberry

marberry@asm.state.nv.us

775-684-8591

Assemblywoman Leslie

sleslie@asm.state.nv.us

775-684-8845

Assemblyman Mabey

gmabey@asm.state.nv.us

775-684-8827

Assemblywoman Gansert

hgansert@asm.state.nv.us

775-684-8837

Chairman Raggio

wraggio@sen.state.nv.us

775-684-1419

Senator Townsend

rtownsend@sen.state.nv.us

775-684-1450

Senator Titus

dtitus@sen.state.nv.us

775-684-6504

Senator Beers

bbeers@sen.state.nv.us

775-684-1475

SAMPLE LETTER: To use this letter, just cut and paste this letter into a new email then send to the legislators named above plus your legislative representative.

Dear _______,

Thank you for your past support of the Institute for Neuro-Immune Disease now under construction at the UNR Medical School. This partnership is bringing new hope to me and my loved ones as I face the struggle of my own neuro-immune disease.

I know that your challenges this legislative year are especially difficult, but they can also be a wonderful opportunity to improve the quality of life in the state of Nevada. The Institute for Neuro-Immune Disease will bring together clinical care, clinical trials and basic translational research to the citizens of Nevada, impacting other patients around the United States and the world. Like so many patients with these diseases, I know the heartbreak of not being able to find a doctor who could diagnose and help me manage my disease. For the first time, I am hopeful that a truly comprehensive option will be available to help fight this disease and allow me to function again.

The Institute will be the first of its kind in the world, and bring together some of the best minds in the field. And this isn’t just an academic exercise. The lack of doctors, treatments, medications and prevention, mean that I and millions of Americans have been unable to live a productive life and been a great burden on our families. The few options that have existed have been expensive and hard to access. The Institute can and will change that.

Through its partnership with Medical School, the Institute will bring a growing patient base to the school, and place its researchers and clinicians side by side with their colleagues at the Med School. The Institute will help bring in new NIH and other federal money and engage in joint research projects that target the underlying causes of these diseases, as well as some of the unique cancers and other conditions that can be present alongside CFS and the similar illnesses that degrade our immune systems throughout our lives.

Please renew and reinforce your commitment to discovering the cause and treatment of neuro immune diseases by agreeing to make additional appropriations for capital expenditures at the Institute and to approve the budget for support of the Institute’s ongoing operations. While you have the chance to fund many worthwhile programs in your job, this modest investment of $3.5 million for construction and $1 million in operating money is an investment that will literally change my life and repay itself many times over.

Thank you for your support of me and my family, and the many other patients who now look to you for hope.

Sincerely,
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