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All Wheels 4 Fibromyalgia sets record for 2-person mixed team in Race Across the West

24 Jun

Our champions! Denise Stone and Karl Wianecki

“Just like dealing with fibromyalgia – crewing an extreme event like this is all about your attitude and working through adversity. We needed to be flexible and adapt to all of the challenges we faced – we worked so well as a team with our single goal of facilitating the safe finish in Durango. We certainly did our job!” (Deb Feather, AW4F crew member and fibromyalgia sufferer)

Congratulations to the All Wheels 4 Fibromyalgia team which set the record for the 2-person mixed under 50 in Race Across the West. RAW kicked off June 15 in Oceanside, California and finished on June 17 in Durango, Colorado. Their official time was 2 days, 2 hours and 4 minutes.

Our AW4F team and brother and sister riders Denise Stone and Karl Wianecki are absolutely amazing! They rode 900 miles with 50,000 feet of climbing in 2 days and 2 hours at an 18 mph pace. This means each cyclist had to ride 250 miles per day with essentially no sleep and only 10-15 min breaks throughout the whole race.

NFA president and founder, Lynne Matallana joined the team at the starting line in Oceanside. “Denise and Karl’s determination through all the difficulty and challenges they faced is shared by all the fibromyalgia patients,” said Matallana. “This is our team!”

“It was great having Lynne at the starting line. More than ever, her being there helped us to focus on our goal of raising awareness for fibromyalgia. We proudly mentioned this in all of our interviews!” added Feather.

“I am so thrilled to have reached this accomplishment with my brother Karl, and our fantastic crew including Ray, Brenda, Deb, Connie and mechanics Julian and Andrew! The crew was flawless – as in all of our past RAAM journeys ensuring optimal rider fuel, perfect navigation, executing fast efficient transitions between riders for all 900 miles, and no bike mechanical issues”. (Denise)

“The 2-person race was much more challenging compared to our 4-person Race Across America. So much more exhausting, and it was a struggle just to eat and stay hydrated. You just have to give everything you have and just keep pedaling.” (Karl)

“The conditions were absolutely treacherous this year – we dealt with extreme heat including 110 degrees through the desert, 40 mph cross-winds, and steep cliffs in Arizona and intensive climbing into Colorado that seemed to never end. All of this with literally no sleep for the full 50 hours.” (Denise)

“The scenery was amazing and really kept us going – my favorite was the sunrise over Monument Valley in Utah and the awesome red cliffs of Sedona. We especially want to thank the AW4F and NFA Facebook fans for sending us encouraging words and thoughts throughout the race! We felt their strength behind us – pushing us along!” (Karl)

NFA president, Lynne Matallana being interviewed at the starting line in Oceanside, CA

Denise riding strong through beautiful Utah - right around her 350th mile of consecutive riding

Karl heading into the 'Glass Elevator' treacherous 10 mile downhill with sharp hairpin turns and 40 mph cross winds

Crew members Deb Feather and Andrew getting Denise ready to ride...again

The Finish Line!

Los Angeles Times live web chat on fibromyalgia and exercise – Monday, May 23

20 May

LA Times live web chat will feature Dr. Ginevra Liptan.

Get information on how exercise can improve quality of life for people with fibromyalgia in a live web chat on Monday, May 23 at 11 a.m. Pacific (2 p.m. Eastern) Chat guest Dr. Ginevra Liptan, medical director of the Frida Center for Fibromyalgia and author of the new book “Figuring Out Fibromyalgia,” will be on hand to take questions.

The Times asked Dr. Liptan, who was diagnosed with fibromyalgia while a student at Tufts University School of Medicine, whether exercise is recommended for someone with fibromyalgia.

“Depending on how it is performed, exercise can either help or hurt someone with fibromyalgia,” she said. “The key is keeping it gentle and slowly increasing exercise intensity, while allowing for adequate recovery time for your muscles.”

Do you have a question for Dr. Liptan? Email shari.roan@latimes.com and join the chat at latimes.com/health to see the answer!


Oct. 23 Fibro Focus in Orange County includes “FACE of Pain” mini-workshop

21 Oct

Attendees to this Saturday’s Fibro Focus event in Mission Viejo, CA will get a special treat from Judith Westerfield, psychotherapist, certified clinical hypnosis & guided imagery therapist who will present a special EXPERIENTIAL mini-workshop to experience first hand how to safely give expression to your own FACE of Pain using the healing power of Therapeutic Creative Expression*

According to Judith, this workshop will teach you an easy way to release feelings and express thoughts quickly, easily and therapeutically. It’s not about ‘art”, being talented, creative or having any artistic experience. It is about safely giving voice to your pain.

Judith will also show a presentation of NFA president and founder Lynne Mattallana’s watercolors, her own journal pictures and those of others with fibromyalgia who have expressed themselves through creative expression.

Attendees will learn how to:

  • Create a vision to make visible your invisible symptoms
  • Express the inexpressible experience of living with a life altering medical condition.
  • See how others have used this powerful (and often fun!) way to help their healing.

This is for the NON-artist – NO talent or experience needed!

About Judith Westerfield, M.A., MFT, CCH,GIT:
Judy has been a psychotherapist, certified clinical hypnosis & guided imagery therapist since 1986.  Diagnosed with fibromyalgia in 1996 she shares her personal and professional experiences to help others with fibromyalgia lead a productive and loving life.

Besides Max, her dog, Judy is passionate about the use of Therapeutic Creative Expression to give voice to the inexpressible and invisible pain that comes with having a life altering medical condition.

In 2005 and 2006 she was honored to be selected by The National Fibromyalgia Association as a “Leader Against Pain”.

As a senior faculty member with the Academy for Guided Imagery since 1989, Judy has had the privilege of training hundreds of health care professionals how to use Interactive Guided Imagery(sm) for mind-body health and healing

To learn more visit her blog: Creativity to the Max where she shares how to do Therapeutic Creative Expression, her personal journal pages, other people’s work and journey with fibromyalgia.

Fibro Focus Details:
Saturday, October 23, 2010
3:00 PM
Norman P. Murray Community & Senior Center
24932 Veterans Way
Mission Viejo, CA 92691

“2nd Annual Extreme Makeover for the Woman’s Soul” Fibromyalgia Benefit & Stilleto Challenge – Atlanta, Oct. 22-23, 2010

20 Oct

If you’re in the Atlanta area, please consider attending the 2nd Annual Extreme Makeover for the Woman’s Soul benefiting fibromyalgia and the National Fibromyalgia Association. It’s sure to be amazing event starting this Friday, October 22 – 23, 2010!

Organizer Mona Austin says, “The purpose of this event is to equip women to soar in their personal and professional lives from the home to the marketplace!”

DAY 1 EVENT HIGHLIGHTS: Meet Tony Terry, Spokesperson for the National Fibromyalgia Association and husband and caregiver to Larondra Terry, who has fibromyalgia. Opening night festivities will be held at AREA Atlanta in Midtown

Location:         AREA of Atlanta, 1860 Piedmont; Midtown, (404) 249-2254

  • Mini-makeovers & pampering services (Hair, make-up, nails, lashes, massages.)
  • “Walk for the cause” Stiletto Challenge
  • Wine-tasting Cocktails and Mocktails
  • Zumba dance demos by Cleo Venegas
  • Lite fare
  • Henna Tatoo
  • HOT VENDORS
  • Shoes, fashion, jewelry, health products and more!

DAY 2 EVENT HIGHLIGHTS

Location:         Maggiano’s Little Italy, 3368 Peachtree Rd. NE; Buckhead (404) 816-9650

  • You will learn wellness, success strategies for business women, wealth building, work/life balance, recognizing Fibromyalgia symptoms and personal branding
  • Power networking with prizes awarded to the most effective connectors
  • Select vendors and exhibitors offering products and services that enhance women’s lives A full course of delicious Italian favorites

To register, and for more information, please visit their website: http://soulmakeoveratl2010.eventbrite.com/

The Stilleto Challenge

R&B veteran, Tony Terry will perform at the Stiletto Challenge Fibromyalgia Benefit in Atlanta, GA on Friday, October 22.  The voice of the classic love song “With You,” Terry is now a spokesperson for the National Fibromyalgia Association (NFA).

Fibromyalgia is a syndrome marked by chronic pain and fatigue that affects over 10 millions Americans–mostly women. Tony’s wife Ronnie is one of them.  Speaking from the perspective of a husband, father and caregiver he is now using his voice to sound the alarm on this often misdiagnosed and misunderstood “invisible” condition.

In support of the $10 for 10 million  Fibromyalgia campaign, the women of Atlanta are invited to attend the Stiletto Challenge and hear Terry sing for only $10.  Starting at 6:00 p.m., the girls night out styled event sponsored by Jireh Communications Group will include shopping with chic vendors, music, beauty and pampering treatments, Zumba Fitness demos, drinks and lite fare at Area In Motion located at 1860 Piedmont (Midtown).

The Stilleto Challenge is also the prelude to the 2nd Annual Extreme Makeover for the Woman’s Soul (EMFWS), a personal and professional development summit/luncheon that will be held the following day, Saturday, October 23 at Maggiano’s of Buckhead located at 3368 Peachtree Rd., NE.  The cost to attend the luncheon is $40.

Join The Stiletto Challenge
With a minimum $10 donation participants must walk along a straight line on the runway in heels 4 inches or higher and conquer the catwalk without wobbling or falling.  Participants will be categorized based on the height of the heel and winners in each category will receive a swag bag and the wearer of the highest heels will earn the title “Queen of Heels.”  Participants may B.Y.O.S. (Bring your own shoes) or use the fancy footwear provided by shoe sponsor Ms. Mary Mack (http://www.msmarymac.com/).

Donate
Donations in support of the cause are being accepted online at their registration portal (http://soulmakeoveratl2010.eventbrite.com/)
or call 703-986-3464.

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

 

“FIBRO FOCUS” coming to Orange County! Medical Expert to speak on fibromyalgia

15 Oct

The National Fibromyalgia Association invites you to attend “Fibro Focus,” a FREE meeting where you can learn more about the signs and symptoms of fibromyalgia, its diagnosis and how you can live with and manage the condition. If you have been suffering from unexplained chronic, widespread pain for 3 months or more, speak to your health care provider and consider joining us to learn more.

Dr. William Shiel M.D., F.A.C.P., F.A.C.R., rheumatologist, Mission Internal Medical Group, will be the featured speaker and will:

  • Share information about fibromyalgia, including symptoms, the importance of diagnosis and a prescription treatment option
  • Provide tips to help people with fibromyalgia take steps to control their condition
  • Host an interactive Q&A session with meeting participants

Details:

Saturday, October 23, 2010

3:00 PM

Norman P. Murray Community & Senior Center
24932 Veterans Way
Mission Viejo, CA 92691

To register, please RSVP to: fforangecounty@wcgworld.com

About Dr. William Shiel:
Dr. Shiel is in active practice in the field of rheumatology in south Orange County, California. He is currently an active Associate Clinical Professor of Medicine at University of California, Irvine. He has served as chairman of the Department of Internal Medicine at Mission Hospital Regional Medical Center. He was selected as one of the most respected doctors in Orange County California in a poll of more than 5,000 physicians in the county performed by the Washington D.C. based Center for the Study of Services as published in Orange Coast magazine in January 2000.

Dr. Shiel has authored and served as a reviewer for numerous articles on subjects related to arthritis for prestigious peer-reviewed medical journals. He has co-edited a medical textbook. He is Co-Editor-In-Chief of the Webster’s New World™ Medical Dictionary, Year 2000 First Edition and Year 2003 Second Edition. He has lectured in person and appeared on television and radio programs both for physicians and the community.

He was a medical commentator for the national news broadcast of medical issues related to the death of Pope John Paul II, Fox News NYC, April, 2005. He has authored numerous expert medical-legal reviews. He is a contributor for questions for the American Board of Internal Medicine.

He is a regular reviewer of board questions on behalf of the American Board of Rheumatology Subspecialty. He served on the Medical and Scientific Committee of the Arthritis Foundation, and is currently on the Medical Advisory Board of Lupus International. Dr. Shiel is proud to have served as Chief Editor for MedicineNet.com since he co-founded it in 1996.

 

The “Fibro Focus” educational support group meeting is sponsored by Pfizer Inc

Pfizer sponsored educational programs for consumers are conducted in accordance with the same high ethical standards that we apply to our programs for health care professionals. Pfizer cannot provide diagnosis, treatment or other medical advice to you. If you have any medical questions regarding your own health, diagnosis or treatment, please consult your health care provider.

All Wheels 4 Fibromyalgia’s Deb Feather finishes her own amazing race

11 Oct

 

Deb Feather, 2nd from left, with All Wheels 4 Fibromyalgia Team members

Remember All Wheels 4 Fibromyalgia who successfully completed the amazing Race Across America this past summer? Deb Feather was one of the crew members, and the only person on the team with fibromyalgia. She was behind the team’s main inspiration!

 

Last month, Deb inspired the team again!

Deb rode 100 miles to finish the Amish Country Century ride on September 11, clocking in at 6 hrs 45 mins. AW4F riders Denise, Dave, Brenda and Yvette proudly joined Deb. They all rode together through the beautiful country roads of Delaware.

“It was a true accomplishment for Deb, and evidence of what pure determination can do – beyond just riding 100 miles!” said team member, Brenda Weaver

Deb said, “The only way that I am able to do this is through the support of my close friends and AW4F Team mates – Denise, Brenda, Dave, Yvette and Jennifer! Their positive encouragement is awesome!  My mindset is “I can’t let them down!”

According to Deb, she trained physically and dietary. “Limiting processed food and eating whole/natural foods is HUGE!  But I have to tell you that I love to get outside, do what most people would think is crazy and just keep pedaling.Do I have flare ups after rides like this?  Sure, but they are temporary compared to the benefits of the accomplishment and natural high!”

Congratulations, Deb!

Read more about All Wheels 4 Fibromyalgia

Fibromyalgia Association of Houston conference offers “New Hope for Fibromyalgia: Research Updates”

15 Sep

Mary Harper is the president of the Fibromyalgia Association of Houston, which is hosting a one-day conference on September 25 called ““New Hope for Fibromyalgia: Research Updates.”

Mary is also a member of the NFA’s Leaders Against Pain, a program which trains fibromyalgia support group leaders and advocates on working with the media and advocating for patient rights at the local, state and federal government levels.

Mary says she continues to benefit from the NFA’s Leaders Against Pain training:  “I’m confident that I will represent the Fibromyalgia Association of Houston well when I am interviewed next week on the live Fox Morning Show. The training that I received at the Leaders Against Pain conference has enabled me to feel comfortable in front of the camera!”

The following is a message from Mary Harper:

On Saturday, September 25, 2010, the Fibromyalgia Association of Houston (FMAH) will host a one-day conference, “New Hope for Fibromyalgia: Research Updates.”

The meeting will be held at the Crowne Plaza Houston River Oaks Hotel, 2712 Southwest Freeway (exit Kirby). Registration begins at 9 a.m., and the meeting opens at 10 a.m. The day concludes at 3 p.m.

The conference features two renowned fibromyalgia researchers from Seattle, Washington who will discuss their work and new treatment options: Andrew Holman, M.D. and Patrick Wood, M.D. are committed to helping fibromyalgia patients through their research and private practice.

Tickets are only $35 and include a hot luncheon and parking. Tickets will NOT be available at the door. Seating is limited, so please register now. Deadline for registration is September 23, 2010.

We are aware that even the low fee of $35 may be too much for some of you. We will offer scholarships if we receive enough donations. To apply for a scholarship or to register, call the Information Line at 713-664-0180. Leave a message with your name and phone number, and our Treasurer will call you back to get your information. If you are able, please consider making a donation of any amount to the Friends of FMAH scholarship fund to enable those with financial difficulties to attend.

Make plans now to attend this exciting and informative conference!

Register on the FMAH website: http://fmah.org/

Atlanta Fibromyalgia Seminar “encouraging and motivational!”

4 Aug

Trena, center, with Martha Beck (l) and Lynne Matallana

Trena Gologan of Atlanta, GA attended last Tuesday night’s fibromyalgia coping seminar in downtown Atlanta with National Fibromyalgia Association president, Lynne Matallana and author/lifecoach, Martha Beck.

Trena shared her experience with FibroBlog:

How did you hear about the seminar? I heard about the seminar through the National Fibromyalgia Association. I have been working with the NFA since March/April 2009. I was able to get a proclamation from the Governor of Georgia declaring May 12 as National Fibromyalgia Awareness Day in GA through the help of NFA. The proclamation is now hanging in the hallway of the campus where I work.

Why did you attend the seminar? I attended the seminar last night because I want to help get FM Awareness out through events like this. I have been a public speaker for a little over 10 years and the only way I get better is from learning and listening to others. I enjoy helping others, and this is a way that I can reach out.

What did you think of the information presented? The information presented was encouraging and motivational. I was inspired.

What was the most important/significant thing you got from the presentation? The information presented wasn’t anything really new to me, but it was encouraging to hear the motivation from Martha and Lynne. It was great for my husband to attend and hear the information. It was a confirmation to him as to what I live through daily and how to handle life with a spouse who has fibromyalgia.

Learn something new? Martha shared with the group a technique on how to relieve some of the pain by focusing on love, then taking a deep breath. She continued to explain how to talk to the pain. I looked at it as if the pain was a confrontational person trying to cause problems, by calmly talking to the pain I would be able to slowly back it away. It is a technique I will try to involve in my daily life.

About Trena:
Trena is a medical school Admissions Coordinator based in Atlanta, Georgia. She was diagnosed with fibromyalgia in 2003. Visit Trena’s website at http://trenagologan.webs.com.

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!

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