ADVOCACY

Many people ask “What can I do to help?”. Well if you ask anyone here, we can send you a list of things you can do. If enough people get involved, we can make things happen. There have been over 50 people who have already indicated (via our questionnaire) that they want to help. Imagine if all 50 people did one fund raising or awareness activity… Get the idea?

AFFTER is working on an Advocacy Package that will give you the tools to follow through with the ideas described below. If you are interested in getting involved, please send us an e-mail at info@affter.org.

The following list gives you a few ideas of what you can do to contribute and make a difference.

• Plan a fund raising event in your town to benefit fibromyalgia research (AFFTER). For example, a bake sale, a rummage sale, etc. Advertisement for such events itself, creates fibromyalgia awareness.
• Ask local organizations to sponsor a fundraiser for fibromyalgia (i.e. Rotary, Lions, etc.)
• Many companies designate money each year to donate to a charitable organization or cause. Speak up! Ask your employers for corporate donations for AFFTER.
• Work on awareness in your town. Call or write to newspapers, magazines and television shows to suggest they do a story on fibromyalgia.
• Start a support group or attend an existing one. Enlist the help of group members to plan a fund raiser or awareness activity.
• Write to your Congressmen and Senators.
• Let us help increase the understanding the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has about fibromyalgia. Dr. Stephen Katz, Director of NIAMS, has been supportive but he needs to hear from us.

CONTRIBUTION

DO YOU WANT TO HELP FUND RESEARCH FOR FIBROMYALGIA?

ARE YOU EMPLOYED OR HAVE A PERSONAL CONTACT WITH A LARGE CORPORATION?

HAVE YOU CONSIDERED ASKING AN EMPLOYER OR CORPORATION TO SUPPORT AFFTER?

READ ON…

How many of you have been reading the fantastic newsletters from AFFTER and wondering how you could help the cause? Now is your opportunity! AFFTER needs money to fund research, and you won’t believe how easy it will be for you to help AFFTER obtain dollars. Here’s a bit of history, and what you need to do: Most employers believe in sharing their good business fortune with the community. They do this by providing donations to local not-for-profit organizations. Most companies have a committee (perhaps called a Contributions Committee) that meets periodically and reviews requests for donations. All you need to do is take the example provided below of a Contribution Request letter, tailor it to your company, and then submit it to the appropriate person or committee. Check with your Human Resources Department to find out more about the request process at your company. When asking for the contribution, think big! Most companies will surprise you with what they donate. Simple enough? If you have any questions, please call Carol at 847-438-8514.

(Copy and Paste this sample letter into your word processor)

To: Chairman, Contributions Committee

From: (Your name, work dept, work phone #)

Subject: Contribution Request

I am requesting that $4,000 be contributed to AFFTER (Advocates for Fibromyalgia Funding, Treatment, Education and Research), a solid, reputable 501(c) (3) Non-Profit Organization. Their Federal Tax ID number is available upon request.

Fibromyalgia, also called FMS, is a chronic and disabling condition characterized by widespread body pain, fatigue, and poor sleep. It is often accompanied by other problems such as irritable bowel/bladder, sleep disorders, restless leg syndrome, headaches, cognitive and memory impairments, reduced endurance, and temporomandibular joint pain (TMJ). The most characteristic finding is the presence of many tender spots throughout the body when slight pressure is applied. It affects almost 10 million Americans, including men, women and even children. The medical community and general public lack knowledge of this “invisible” illness that leads to misdiagnosis, unnecessary surgeries, and inadequate treatment. There is no FDA approved treatment for this painful, disabling illness due to the lack of allocated research. Since there is so little knowledge about fibromyalgia, patients are left to deal with this syndrome the best way they can.

As the name AFFTER implies (Advocates for Fibromyalgia Funding, Treatment, Education and Research), this organization is committed to improving the lives of those afflicted with this life altering, painful illness. This organization sponsored a seminar at the College of Lake County in which many health care professionals, patients and their families, learned more about this devastating illness. The organization also sponsors monthly support group meetings where patients are provided an opportunity to share their experiences and successful treatments. There were 3 highly successful, six-week, self-help courses completed and more are in demand. Informative newsletters are published, and other printed materials are available upon request for those in need. They have already awarded funds to a researcher, for a study of a medication to help control the pain of fibromyalgia. Unfortunately, more money is needed for this project to be completed and others to be started.

AFFTER is run exclusively by volunteers and is operated out of the home of their President. Since there are no salaried employees or major overhead, each donation goes towards accomplishing their mission, generally involving education and research for fibromyalgia. Volunteers need funds to meet the objectives, and research costs a lot of money. This is an organization I support. Is there any reason why you can’t also help them meet their objectives?

Sincerely,

(Your typed name with signature below it. Include you work area and phone number.)
 

LETTER CAMPAIGN

AFFTER has launched a letter writing campaign to inform our government about fibromyalgia and urging them to fight for us to get more allocated funding for research. In our AFFTER News section, we posted a mailer from October??? that talked a lot about our letter writing campaign, so please refer to our NEWS section on this website for more details about the NIH and the funding initiatives. We described in great detail what the NIH is doing about fibromyalgia research, including the specific wording in the recent legislation that is referred to on this page.

We are making headway - we have received letters from some of you and appreciate your effort. We are looking for MORE PARTICIPATION! This is one way that we as patients can MAKE A DIFFERENCE! Odds are, if enough people write, we will hit at least one person in Congress who either has fibro, or is related or married to someone who has it! THAT is the person who we need to find – so PLEASE HELP us by writing your letters, and send a copy to AFFTER for a combined effort on a larger scale. For those of you who receive our newsletters, review the articles in the last issue (Volume 7) regarding where research is headed. The three people who wrote articles are well informed on the topic of research and stressed the need for us as patients to give a nudge to the National Institutes of Health (NIH) via Congress. This is serious and very important that everyone supports this effort and does your part. For a reminder, below is some background information along with details of what to include in your letter and where to find the names and addresses of who to write to. Remember, these are people we vote for – they need to hear from a lot of us!

In the past NIAMS (National Institute of Arthritis and Musculoskeletal Skin disease) has been the home of fibromyalgia research. Recent legislation encouraged NINDS (National Institute of Neurological Disorders and Strokes) to study the neurological aspects of fibromyalgia and encouraged the two NIH institutes (NIAMS and NINDS) to work together to study fibromyalgia. So far, that hasn't happened. The bill also encouraged studies of drugs that are specific to the treatment of fibromyalgia. We have seen a few hopeful medications such as pregabalin, milnacipran and ultracet, but there is still a lot to be done. The effectiveness of this bill getting the NIH to follow through with their plan depends on the commitment of NIAMS.

In your letter: 1) Explain how your illness has changed your quality of life and affected your family; 2) Explain how your illness has affected you financially; 3) Remain as professional and composed as possible; 4) Tell them that we are depending on them to speak up for the millions of Americans who suffer with this illness. Remind them how many people have fibro and how many votes that represents; 5) Let them know that you are aware of legislation under the Senate Appropriations Committee Report, Bill S.2766, emphasizing the need for more funding for fibromyalgia research; 7) Tell them that there are NO FDA APPROVED TREATMENTS. Urge them to get NIAMS to work with NINDS, and to work with drug companies to find effective medications. Millions of dollars are wasted each year on treatments that don't work; and, 8) Thank them for their time.

Find out who and where to write to by looking at the website

http://www.firstgov.gov/Contact.shtml

Don't sit back and wait for others to do the work. This letter will only take minutes of your time and will make a huge difference if enough people participate. No one is going to "grade your paper", so don't stress over how good your grammar and spelling is! It is the quantity of letters and who we connect with that counts.

Please forward a copy of your letter to AFFTER so we can follow through with one more effort taken to a higher level. You can email your letter to us at INFO@AFFTER.ORG. Please, don't send email attachments – you can easily copy and paste your letter from Word (or whatever) into an email document. THANK YOU!

PLEASE PARTICIPATE AND WRITE YOUR LETTERS! Progress is made in numbers and as a group - not by the efforts of one or two individuals!

WHY DONATE TO AFFTER?

All funds raised go directly to our mission, which is to improve fibromyalgia funding, treatment, education and research. A donation to AFFTER would make you eligible to receive the Fibromyalgia Focus Newsletter, the official voice of AFFTER. This professional newsletter is sixteen pages long and includes helpful and accurate information about FMS, as well as updates on organizational activities. You will also be eligible to receive discounts on AFFTER events, educational activities and resources.

You do not have to have fibromyalgia in order to donate to AFFTER. Perhaps you know someone who has fibromyalgia and want to help them somehow. Why not make a contribution to AFFTER? You can be sure that 100% of your money would go towards helping people with this life altering, painful illness. If you decide to contribute in honor of a friend or family member, we will inform that person that you have donated to their cause.

Click here to print out a Donation Form or use the PayPal Button to the left.
* You do not need a PayPal account to Donate to AFFTER, All donations are 100% tax deductible.