ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
266 Port Road,
South Australia 5007
Ph: 1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Support sought for US Bill – update
Sunday 13 May 2007
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!
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.
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.
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.