Archive | June, 2010

Stop unethical practice of “Step Therapy” and help support AB 1826

29 Jun

The National Fibromyalgia Association is supporting the passage of California Assembly Bill 1826, which would end the unethical practice used by insurance companies known as “step therapy” or “fail first.” Step Therapy requires patients try and “fail” up to five older, less expensive medicines before they gain access to the treatment initially prescribed by their doctor—critical medication for Californians suffering from fibromyalgia, neuropathy, multiple sclerosis, arthritis, cancer, and diabetes-related pain, among many other painful conditions.

The NFA has contacted its members in California, urging them to write a letter to the state Legislature in support of AB 1826, and include their personal experiences with Step Therapy.  Click here to view a template of the letter. The bill is expected to go for a vote in the Senate Health Committee on Wednesday, June 30, 2010.

If you feel comfortable sharing your personal experience associated with Step Therapy with the media, the NFA would like to help your voice be heard regarding the need for this legislation. Please send a copy of your letter to:

National Fibromyalgia Association
Attention: Karen Wallace, Project Manager
Email: kwallace@fmaware.org
Fax: 714-921-6920

Vote for P.A.N.D.O.R.A., Inc. in Chase Community Giving Project

28 Jun

Marly Silverman, far right, with other Leaders Against Pain: "The NFA’s Leaders Against Pain program undoubtedly gave me greater confidence to do what I do now successfully and effectively."

Marly Silverman is one of the original members of the NFA’s Leader Against Pain, a program launched in 2005 for support group leaders and advocates that focuses on media, advocacy and leadership training.

Marly, who has Chronic Fatigue Syndrome and fibromyalgia, has been hard at work as a leading patient advocate and founder of P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.) an emerging national 501c3 charity organization advocating for patients with CFS-ME, FM, GWS, EI, and chronic Lyme disease and other tick borne illnesses.

Her latest major project is the establishment of the Neuroendocrineimmune (NEI) Center™, a patient-driven community project of P.A.N.D.O.R.A. in the state of New Jersey.

To help raise funds to build the NEI Center, P.A.N.D.O.R.A. is participating in the Chase Community Giving project on Facebook. Chase Community Giving will give away $5 million to charity. You help decide which 200 local charities receive donations by voting on Facebook. One charity will receive $250k; 4 runners-up will receive $100k; and 195 others will receive $20k

So far, P.A.N.D.O.R.A. has been one of the top vote getters, thanks to Marly and P.A.N.D.OR.A.’s efforts! Please help Marly and P.A.N.D.O.R.A. by clicking here to cast your vote:

http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

Marly credits her training with the NFA to her successful advocacy efforts: “The NFA’s Leaders Against Pain program undoubtedly gave me greater confidence to do what I do now successfully and effectively. I was able to cultivate wonderful life-long personal and professional friendships.

“I always looked forward to attending the NFA’s LAP meetings, because they are always inspirational, educational, and fun. I particularly liked the hands-on experience given in the Media Training sessions. The tips on how to address a reporter and how to write letters to the Editor were excellent. So while I knew I wanted to be a patient advocate for neuroendocrineimmune disorders, with the Leaders Against Pain training, through these leadership programs, I learned how to be even more effective!”

Thanks, Marly!

First place! Supporters of All Wheels 4 Fibromyalgia “gave us that ‘oomph’ to keep going!”

21 Jun

All Wheels 4 Fibromyalgia cycling team reported that they were the only team they knew who had such enthusiastic supporters coming out at all hours of the day and night to greet them at several time stations throughout the country during last week’s Race Across America.

Wearing orange and blue team colors, waving banners and balloons, supporters greeted the team, sometimes waiting for hours at a time at the time stations to show their appreciation for the riders.

“Our riders and crew were exhausted at the end of each day, but to see the people with fibromyalgia waiting for us at the time stations, especially in the middle of the night, was amazing,” said rider Denise Stone. “They really gave us that ‘oomph’ to keep going!”

With all the warm cheers and encouragement, is it any wonder that All Wheels 4 Fibromyalgia finished in first place in the 4-person mixed category and second place overall? (First place winner was a professional team!)

The AW4F cycling team, consisting of 4 riders and 12 crew members, started their non-stop, coast-to-coast ride in Oceanside, California on Saturday, June 12 and ended on Friday, June 18 in Annapolis, MD in record time of 6 days, 5 hours and 21 minutes, with an average speed of 20.12 mph.

AW4F partnered with the National Fibromyalgia Association and select sponsors to raise funds and awareness of fibromyalgia. From Oceanside, California to Bloomington, Indiana, Teutopolis, Illinois and Ellenboro, West Virginia, the team was met by people with fibromyalgia who heard about their efforts mainly from the NFA’s Facebook page and website.

But, members of the team were also keeping up with the fan posts on Facebook. “My wife, Janna, would read us some of the posts and messages, and we were very moved by them,” said rider Karl Wianecki. “It was just overwhelming to know that we really touched people, and that they would come out for us like that. It was a very powerful experience for me!”

During last Saturday’s awards banquet in Annapolis after the race, AW4F rider Gernot Wolfram also gave an impassioned speech at the podium when asked by the organizers to say a few words about the NFA, the team’s charity of choice and their cause. News of the “midnight” fibromyalgia supporters drew the loudest cheers from the attendees.

“I talked for 15 minutes about what it meant for us to get the support at time stations, and what it meant for people with fibromyalgia to get out of their homes in the middle of the night,” Gernot Wolfram proudly recalled.  “The audience was really moved. Other teams didn’t have fans showing up for them!”

As for raising awareness for fibromyalgia?

“We talked with many people at time stations about fibromyalgia,” said crew member Brenda Weaver. “We handed out information and brochures from the NFA, and people were always asking us about fibromyalgia after seeing it on our jerseys and shirts. We got numerous media coverage thanks to our supporters and bloggers. And, many RAAM members couldn’t even say fibromyalgia before the race, now they actually know what it is!”

You can still help All Wheels 4 Fibromyalgia reach their fundraising goal of $100,000! Click here to donate.

Coming Soon! Stay tuned for an upcoming video and more in-depth articles in FM AWARE magazine on the amazing race of All Wheels 4 Fibromyalgia!

NEW! NFA offers Regional Services and Calendar of Events Sections

21 Jun

Free event listings for nonprofits

The National Fibromyalgia Association has added new “Regional Services” and “Calendar of Events” sections to be published in the upcoming (Vol 23) print and digital issue of Fibromyalgia AWARE magazine.

Services are listed by state.  Events are listed by month. Nonprofit organizations may list their events free of charge, depending on space availability. Business listings are charged $50 per line.

Deadline is July 7, 2010 for events scheduled in August, September or October.

Click here to view a sample of the new section.

For more information or to place your listing, contact Susan Watcher, NFA Executive Sales Manager at swatcher@fmaware.org, cell: 714-225-1579; office: 714-921-0150.

Come meet “All Wheels 4 Fibromyalgia” as they cross finish line in Annapolis, Friday – 7 pm

17 Jun

Wear your orange and blue!

If you would like to show your support and cheer on All Wheels 4 Fibromyalgia as they cross the finish line on Friday, June 18 in Annapolis, Maryland, visit the Race Across America website for up-to-the-minute postings on their arrival time. Estimated arrival time in Annapolis City Dock is 7:00 pm Eastern.

Cruising through the Midwest. Almost home!

Here’s an “On the road report” from crew member, Brenda Weaver:

“The riders continue to amaze us – they have persevered through a snow storm over the Rockies and only 40 degrees coming out of Colorado, the cross winds of the plains of Kansas, and now the 90 degree heat and humidity of the midwest. They continue to average 20.5 mph and hold their position despite riders now being quite fatigued.

The crew has been amazing as well – since the riders are so fast we need to be extremely fast as well and efficient with making rider fuel, mastering navigation, bike mechanics and so much more! The crew is giving everything we have including Kate surviving a major finger injury by getting it caught up in Denise spokes in the lighting speed bike transition. On the bright side Feather has now joined us – so look out! Send us all your luck and prayers!”

All Wheels 4 Fibromyalgia before the start of the race in Oceanside, California

Come see “All Wheels 4 Fibromyalgia” cross the finish line in Annapolis – Friday, 7 pm!

17 Jun

Only one more day to go!

All Wheels 4 Fibromyalgia at the start of the Race Across America in Oceanside, CA

If you would like to cheer on All Wheels 4 Fibromyalgia as they cross the finish line on Friday, June 18 in Annapolis, Maryland, visit the Race Across America website for up-to-the-minute postings on their arrival time. Estimated arrival time in Annapolis City Dock is 7:00 pm Eastern.

"Angel" with crew members Brenda Weaver, Deb Feather (our crew member with fibromyalgia) and Christy Zaleski

“Midnight Angel” meets up with All Wheels 4 Fibromyalgia in Effingham, IL
We would like to thank Judy “Angel” Pals of Teutopolis, Illinois for coming out late last night to cheer on the “All Wheels 4 Fibromyalgia” and to share her moving personal story with the Team. It is people like Angel who are making a huge difference to helping to get the word out about fibromyalgia!

Owen County Fibromyalgia Support Group inspires “All Wheels 4 Fibromyalgia” Cycling Team during station stop in Bloomington, IN

17 Jun

Cheering and waving a bright orange and blue banner emblazoned with the words, “Spencer, Indiana Supports All Wheels 4 Fibromyalgia and the National Fibromyalgia Association,” members of the Owen County Fibromyalgia Support Group met the “All Wheels 4 Fibromyalgia” cycling team during their station stop in Bloomington, Indiana on Wednesday, June 16.

All Wheels 4 Fibromyalgia and Owen County FM Support Group (l-r) Dave Stauffer (cyclist), Frank Nardi, Deb Feather (crew), Christy Zaleski (crew), Brenda Kadic Nardi, Judy Flowers (crew)

“It was a great experience meeting the ‘All Wheels 4 Fibromyalgia’ team! They are terrific, wonderful, genuine, loving people!” said Brenda Kadic Nardi, founder of the Owen County Fibromyalgia Support Group. “We really enjoyed our time with them.  I am already looking forward to supporting and volunteering next year!

“All Wheels for Fibromyalgia” is one of the teams racing in the 3,000-mile “Race Across America” which started last Saturday, June 12 in Oceanside, California and finishing on Friday, June 18 at the City Dock in Annapolis, Maryland.  Consisting of 4 cyclists and 12 crew members, AW4F has partnered with the NFA and select sponsors to raise funds and awareness of fibromyalgia.

Reporting from the road, team leader Yvette Hess told FibroBlog: “AW4F crew struggled through a tough overnight schedule last night. Finding eager supporters like the Owen County Fibromyalgia Support Group was a huge boost for us and reminded us why we are here. It is always inspirational to meet fibromites in person and on Facebook. We thank them for following us and coming out!”

For more information about All Wheels 4 Fibromyalgia, visit www.fmaware.org/RAAM or follow them on Twitter: www.twitter.com/allwheels4fibro.

All Wheels 4 Fibromyalgia team with Owen County FM Support Group

About the Owen County Fibromyalgia Support Group
The mission of the Owen County Fibromyalgia Support Group is to provide positive support and accurate helpful information via a non-threatening environment. The group meets at 1:00 pm on the 2nd and 4th Thursdays of the month at the Owen County Library located at 10 S. Montgomery Street in Spencer, IN. For more information, contact Brenda Kadic Nardi at 812-585-0472.

“Relax Pack” pledges $1,000 to the NFA when company’s Facebook page reaches 1,000 fans

16 Jun

Tiffany Buntin, diagnosed with fibromyalgia in 2005

Tiffany Buntin was diagnosed with fibromyalgia in 2005, but the Arizona business owner was no stranger to chronic pain ever since a rigorous workout at the gym two years before left her in constant physical anguish.

“I think I was stretching too hard, and something just seemed to pop in my spine,” Tiffany recalled. “I had chronic fatigue even before that, and with my mother also having fibromyalgia, I think it was just festering in my body waiting for a trigger.”

After trying numerous doctor visits, therapies and medications which only made her pain worse, Tiffany discovered the benefits of hot and cold therapy packs. Although they gave her much needed relief, Tiffany, like many people with fibromyalgia, was also prone to chemical sensitivities. The packs, she noticed, weren’t organic, and some of them didn’t even contain the “herbs” as advertised.

Entrepreneurial in nature and experience, Tiffany launched “Relax Pack,” a 100% organic herbal pain therapy pack company in November 2009.

“Our packs are handmade in our Scottsdale, Arizona warehouse using only 100% organic fabric and ingredients,” Tiffany proudly claims. “My packs are not a cure, but they are designed to help those who suffer from chronic illness or an injury by relieving some of the pain, if just for a little while, to help you get on with your day.”

Relax Pack body pack

1,000 Facebook fans campaign
With over 1,000 customers less than a year since its launch, Relax Pack is enjoying a growing following, especially on social media sites, such as Facebook.

Relax Pack’s Facebook page has nearly 900 followers or fans. As a way to give back to the fibromyalgia community, the company pledges to donate $1,000 to the National Fibromyalgia Association once it gets 1,000 fans on Facebook. Through the sales of its “Fibro bracelets,” Relax Pack has already donated $2,518 so far to the NFA via its Cause page on Facebook.

“When I was first diagnosed, I looked online to find out more about fibromyalgia, and that’s when I found the NFA’s website,” recalled Tiffany. “It was fantastic, informative, and I love what the NFA is doing for people with fibromyalgia.”

How All Wheels 4 Fibromyalgia Team Helps the NFA

11 Jun

NFA staff and volunteers show their support and appreciation for “All Wheels 4 Fibromyalgia.”

On Saturday, June 12, 2010, members of “All Wheels 4 Fibromyalgia” cycling team will start their non-stop, coast-to-coast Race Across America bicycle ride in Oceanside, California, ending 3,043 miles later in Annapolis, Maryland.

Of all the charities to choose from, the cycling team of 4 cyclists and 12 crew members chose to raise awareness and funds that go directly to the NFA.

So, why would the “All Wheels 4 Fibromyalgia” endure what many consider the toughest race in the world to raise money and awareness for fibromyalgia?

Here’s what the team and crew members had to say:

“It is a great privilege to ride for fibromyalgia awareness. I pray that by our riding across this country, we can bring more awareness to fibromyalgia, and through that awareness, we can find a cure.”  –Dave Stauffer, cyclist for “All Wheels 4 Fibromyalgia,” also has a friend with fibromyalgia

“Most people do not understand that you may feel good one day and horrible the next.  Awareness, understanding, empathy and a possible cure in the future are the reasons why I choose to help the NFA.”  –Deb Feather, rider crew, diagnosed with fibromyalgia 15 years ago

“Fibromyalgia is a wide spread chronic pain condition that affects 10 million people.  The challenge with this particular disease is lack of awareness.  I want to participate in this event to help the NFA in their mission to raise awareness for the millions of people that suffer from this disease and help to find a cure.”  — Brenda Weaver, rider crew

“I’m thankful to all the people who came out to cheer for us at the start and along the course last year. I look forward to the wonderful people who we will meet along the way. It was so nice to speak with people living with fibromyalgia who drove through the pain to get to time stations to meet us. They are truly an inspiration for us to do well!”  — Denise Stone, cyclist and friends with crew member, Deb Feather

Race Across America Begins June 12

9 Jun

Follow and cheer on the team at designated time stations and towns near you!

What:

“All Wheels 4 Fibromyalgia” is a cycling team of four cyclists and 12 crew members who are partnering with the National Fibromyalgia Association to bring awareness of fibromyalgia, and to raise funds to support fibromyalgia research and community-based education programs for individuals affected by this disease. The Team will race nonstop for 3,000 miles across the United States from Oceanside, CA to Annapolis, MD in the world’s toughest bicycle race called “Race Across America” (RAAM).

Where: Join the National Fibromyalgia Association and “All Wheels 4 Fibromyalgia” on Saturday, June 12, from 10:00 am to 3:00 pm at the Oceanside Pier Amphitheatre as we send off the Team. Race begins at 2:00 pm sharp! Be sure to stop by the NFA booth.

Be There:

Lend support and encouragement while following the Team online! AW4F will be posting real-time updates and locations on their Twitter and Facebook accounts (You don’t have to sign up for Twitter or Facebook to view the posts).

RAAM travels through 13 states between June 12 and June 18. If you are in the vicinity of the RAAM route, we encourage you to show your support in person. Wear the orange and blue team colors, bring signs and cheer for the racers! After miles of pedaling, your enthusiasm and support will bring much needed encouragement to our champion riders and crew. View time station locations and estimated arrival times here.

Be sure to check Twitter and Facebook for the most up to date information.

Donate:

Support the efforts of “All Wheels 4 Fibromyalgia” by making a donation to support fibromyalgia research and community-based education programs for individuals affected by the disease.  The team’s goal is to raise $100,000 by June 12.

More Info:

Click here to view the team page to see photos and bios of the team members.

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