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NFA goes “LIVE” on KCAL 9 Los Angeles with “Fibro Focus”

19 Oct

Lynne Matallana, president and founder of the National Fibromyalgia Association, and Dr. Hernan Castro-Rueda, were in-studio guests Monday on KCAL 9 News, the Los Angeles affiliate of CBS,  to discuss fibromyalgia, its signs and its symptoms. They also talked about “Fibro Focus,” a free educational seminar on October 23 in Mission Viejo. The event will be held at 3 pm at the Norman P. Murray Community & Senior Center, 24932 Veterans Way, 92691.

Click here to watch the KCAL 9 video segment: For many, fibromyalgia is a complete pain KCAL 9 CBS- LA

 

Lynne Matallana and Dr. Hernan Castro-Rueda, 2nd & 3rd from left are interviewed on KCAL 9 news

 

 

Lynne in front of studio before her interview, crutches and all!

 

 

"Fibromyalgia is a real disease!"

 

 

Lynne is a real pro! Here she is getting mic'd

 

 

Dr. Castro-Rueda hopes to bring more awareness of FM to his fellow physicians

 

Aloha! New Fibromyalgia support group for adults & children forms in Hawaii

14 Sep

FibroBlog first featured Kristina Lum’s “My Fibro Story” in July. Kristina is the former Mrs. Hawaii 2008-2009, and was diagnosed with fibromyalgia in 2009. She had reached out to the NFA with her plans to start a fibromyalgia support group in Hawaii for both adults and children. She was also working on getting a proclamation for Fibromyalgia Awareness Day.

This week, we heard back from Kristina, with yet another amazing report on what she is doing to raise awareness in the Aloha State!

From Kristina Lum:

Dear NFA:

I just wanted to share some wonderful news:  I met with the Mayor, and we now have a proclamation for Fibromyalgia Awareness Day in Hawaii!  Midweek magazine here also did a story on it (see attached).  I have a new support group called Fibromyalgia Support Hawaii.  Our e-mail address is fibrosupporthawaii@hotmail.com, and we also created a Facebook group for members of the support group.

Thank you again for your support!!  What a great day for Hawaii!

NFA Makes Call to Action in Response to FDA postponement of decision to approve sodium oxybate (Xyrem) for treatment of fibromyalgia

26 Aug

As a participant in the FDA public hearing held on August 20 for the approval of sodium oxybate (Xyrem) for the treatment of fibromyalgia, the National Fibromyalgia Association would like to congratulate and thank the patients and physicians who also took part in the proceedings. Because of their outstanding contribution and willingness to share their personal stories, we believe the members of the panel now have a better understanding of the extensive needs for new and improved treatments for fibromyalgia.

Recent research, including the studies of Xyrem, have helped to further build legitimacy for fibromyalgia, and provide a better understanding of the complexities of the physical abnormalities within the central nervous system that play a major role in the pathophysiology of fibromyalgia. It was clear at the hearing that there continues to be a need for decision makers to be made aware of patient needs and attitudes about treatments, and their practices in utilizing medications as confirmed by published fibromyalgia research.

We are now further aware of the panel’s concern that the misuse of sodium oxybate could lead to negative consequences for fibromyalgia patients and others. However, research shows that fibromyalgia patients do not exhibit addiction tendencies. On the contrary, fibromyalgia patients are conservative in their use of pain medications.

Understandably, the NFA was very disappointed in the panel’s vote to presently deny approval of Xyrem for the treatment of fibromyalgia. Fibromyalgia patients have the right to have medications available for treatment that have great potential, as shown by in-depth clinical studies, to beneficially impact their quality of life.

To read the complete statement, click here.

Lynne Matallana, president and founder of the National Fibromyalgia Association, testified at the FDA hearing on Xyrem. Read the transcript of her testimony here.

Free gift to NFA Facebook fans from “To Your Good Health Radio”

25 Aug

On August 19, NFA president Lynne Matallana, was interviewed live on To Your Good Health Radio. It was the first time that the show, which has featured celebrity guests like Mariel Hemingway, Stephen Baldwin and Suzanne Sommers,  talked about fibromyalgia.

“The show received the most emails and questions for this segment!”

According to the show’s host, Dr. David Friedman, who is the health expert for Life Time Television’s morning show, Lynne’s interview was one of the most popular segments in the show’s history! “We received the most emails and questions for Lynne than any other show!” Dr. Friedman announced on the air.  One email came from a hospital with a  support group for fibromyalgia sufferers who were so impressed with the show and with Lynne that they want to play it for their members.

Here’s a message to the NFA from “To Your Good Health Radio,” as well as a special free gift offer just for the NFA Facebook fans!

To Your Good Health Radio would like to thank Ms. Matallana for joining our show and giving our listeners so much valuable knowledge!  We hope to have you on our show again very soon.

If anyone missed the show, just go to www.Facebook.com/toyourgoodhealthradio. Anyone who goes to our Facebook page and “likes us” and listens to Lynne’s segment will receive a free MP3 of the host, Dr. Friedman’s best selling CD, “America’s Unbalanced Diet”  as a gift to those who follow such a wonderful foundation – National Fibromyalgia Association!

Simply hit “Like” to become a fan of the page, then send an email to newsletter@toyourgoodhealthradio.com to have the download instantly delivered to your inbox!

NFA applauds Allsup on 75th anniversary of Social Security

16 Aug

Allsup, a nationwide provider of Social Security disability representation and Medicare plan selection services, has been one of the strongest supporters of the National Fibromyalgia Association. For the past several years, Allsup has created and distributed Fibromyalgia Awareness Day posters in support of Fibromyalgia education and awareness.

Allsup works with hundreds of individuals with fibromyalgia each year and recognizes the need for healthcare provider and patient education.

“Allsup is pleased to support the National Fibromyalgia Association’s education and outreach efforts,” said Tai Venuti, Allsup manager of strategic alliances. “As we reflect on the history of the Social Security Administration, we see how it has responded to advances in medicine and societal changes. This development over time is something that the fibromyalgia community can relate to as the condition becomes better understood over time. NFA is an effective advocate for positive change on behalf of individuals who cannot work because of fibromyalgia, chronic pain and other conditions.”

August 14, 2010 marks the 75th anniversary of the Social Security Act that introduced a form of economic security that didn’t exist for the elderly. Nineteen years later, the disability division was created. The Great Depression was a triggering event for the original legislation, and now, during the current economic crisis, individuals and their families are realizing the crucial support provided by Social Security’s programs, according to Allsup.

“The Social Security Administration and its nearly 65,000 workers continue to provide an invaluable service to Americans who retire or who can no longer work because of disability,” said Jim Allsup, president and CEO of Allsup. “We honor SSA workers’ dedication to public service and thank them for making these programs possible. We especially recognize their commitment to improve Social Security’s disability backlog crisis. We hope that government and industry can work together to ensure that all Americans with disabilities receive the benefits they have earned.”

In the News: Living with Fibromyalgia

8 Jun

Watching her active 24-year-old daughter metamorphose from an active career woman to someone often too pained and fatigued to get out of bed in the morning was a nightmare for Pat Radtke of Eastpointe.

“It was hard to believe and hard to watch,” said Radtke, mother of Sharon Waldrop of Royal Oak, founder of the Fibromyalgia Association of Michigan. “It didn’t seem like my Sharon. We had no idea what was wrong. I kept thinking: ‘Is this how it’s going to be now? What kind of life can my daughter possibly hope for?’ “

That was 14 years ago. Research indicates that fibromyalgia is a central nervous system disorder in which sufferers are unable to process pain information correctly; pain is amplified as a result.

“I’ve come a long way,” said Waldrop, who created the event to educate those with fibromyalgia and encourage them and their supporters to open dialogue with state legislators regarding needs and resources for people living with the pain. “If I can encourage others to get the education they need, I can make a difference.” ….

For more information about fibromyalgia and resources, visit the national organization at www.fmaware.org.

This is an excerpt from a May 18 article in The Macomb Daily written by Maryanne Kocis MacLeod.  Click here to read the full story.

In the News: Her son’s music helps ease a mom’s pain

14 May

At first, doctors thought that Phyllis Talarico had suffered from a stroke.

Her eye was drooping, she felt disoriented. She was exhausted and in pain.

It took 17 doctors before the Yorba Linda woman was diagnosed with fibromyalgia, a little-understood and painful disorder that affects millions of people – mostly women – in the United States.

Nearly two decades after her diagnosis, Talarico, 64, has become a standard-bearer in the fight to raise awareness about the disorder. To that end, she asked her son, a Christian youth minister and musician, to write a song for her.

“Vigil Song,” is being recorded by R&B artist Tony Terry, who is performing with Pasquale on Saturday at a Fibromyalgia Awareness Day hosted by Cal State Fullerton.

The free event, featuring workshops, health screenings, a 5K walk and musical performances, will be held from 11:30 a.m. to 7 p.m. It will take place near the Kinesiology and Health Science Building at the campus.

Terry, a well-known musician who topped the Billboard charts several times in the 1990s, has a personal reason for recording the song. His wife, Larondra, has been battling fibromyalgia since the birth of their son in 2006.

For more information on the Fibromyalgia Awareness Day event on May 15, click here.

This is an excerpt from a May 14 article in the Orange County Register written by Jessica Terrell.  To read the full story, click here.

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