FMDSA,Fibromuscular dysplasia

FMDSA News - Spreading the Word

The Americam stroke Association Recognizes Fibromuscular Dysplasia as a Cause of Stroke

We did it!
Yes, FMD is now recognized as a cause of stroke by the American Stroke Association.
They did a wonderful feature article with our own Pam Mace on the cover with additional stories of FMD patients inside.The "Stroke Connection" magazine also gives a detailed description of FMD for patients, physicians and healthcare providers. The response to the article is overwhelming and we are greatfull to the American Stroke Association for their recognition. Get a copy of the magazine today!

National Stroke Association Honors FMDSA President

In the November/December 2006 issue of StrokeSmart Magazine, FMDSA Board Chair, Pam Mace is featured as the NSA’s Champion of Hope. Pam is honored for “pioneering awareness of Fibromuscular Dysplasia”. The article documents her journey from being diagnosed with Fibromuscular Dysplasia at age 37 to her being named President of the Board of the FMDSA seven years later. Pam joined the FMDSA in 2004 and has been representing our organization in its campaign to broaden the medical communities understanding of FMD which will ultimately result in improved diagnosis and treatment of
Fibromuscular Dysplasia.

Florida Fundraiser nets more than $12,000
Ms. Deborah Koehler, well known in Tampa Bay, Florida for her work in the real estate industry, hosted an invitation-only dinner party to raise funds for the FMDSA. The event was held in honor of her good friend and FMDSA board member, Cheryl Golden.
Stroke Specialist, Dr. Rob Taylor from Tampa General Hospital attended the dinner and spoke with many of the guests answering their questions about FMD. Board President, Pam Mace, presented a brief talk about FMD and the mission of our organization. Food and beverages were donated by Tom Golden.
The event raised a record $12,000 for Fibromuscular Dysplasia research and awareness. This is the highest total raised for FMDSA by a privately held fundraiser. For Cheryl Golden, the hightlight of her evening was not just the great success of the event, but that she shared the evening with three other ladies, Pam Mace, Susan Bell and Tracy Hanlon, who also have FMD.

Our gratitude to Deborah Koehler for hosting this wonderful event.

FMDSA Member Makes Tremendous Strides for FMD Awareness

Ronni Herrick had a busy October. Both Ronni and her mother, Ruby Lomke, have FMD and they have a story to tell. Ronni wanted to raise awareness of FMD in her community of Gainesville, Florida so she contacted her local newspaper and asked to tell her story. Diane Chun, a staff writer for the Gainesville Sun, was interested in hearing what Ronni had to say. The October 16th issue of The Gainesville Sun features an interview with the two women about their experiences of being first diagnosed with this disease (Ruby was diagnosed first) and how they both have learned to live with the challenges that come with it.

The newspaper sells approximately 53,000 copies a day and is read by multiple persons in some households. You can read Ronni and Ruby’s story at www.gainesville.com, October 16th, 2006 issue.

Ronni certainly met her goal to raise awareness of FMD but she didn’t stop there. On Friday, October 27, she and her husband decided to visit their local ABC station WCJB-TV 20. She got the attention of Reporter, Gavin Johnson who asked to interview her and Ruby. The ladies were interviewed on film in their home on Sunday October 28th and the segment aired on the 6:00 p.m. news as well as a repeat broadcast the following morning.

But wait, there is more! While visiting a friend’s art gallery, Ronni met Susan Maynard, an event coordinator for the High Springs Florida Home and Garden Show. She casually started to share her recent media experiences with Susan when Susan offered to give Ronni an exhibitor’s booth at the Home and Garden Show if Ronni would, in exchange,
speak at the event. This was Ronni’s first public speaking experience and she says that she’d do it again in a minute. Hat’s off to Ronni and Ruby for their extraordinary efforts and for speaking so candidly about their personal experience of living with FMD.

FMDSA attends American Neurological Association Conference in Chicago

The ANA anual meeting was held October 8th - 11th in Chicago. The purpose of the meeting is for members of the ANA to meet to discuss recent advances in the structure and function of the nervous system, its pathology, new therapies and new diagnostic technology comprise the major topics of the annual scientific meeting.

The FMDSA had a booth at the conference and we were successful in sharing information on FMD and making some great contacts. Pam Mace manned the booth with the help of volunteers Maureen Murley and Alaina Murley. Kudos to Maureen and Alaina!

Author Honors FMD Support Group and FMDSA in Her New Book

FMDSA Member, Patsy Culp Hull was diagnosed with FMD in 1992. Patsy says that when she was first diagnosed, there was hardly any information available on FMD at all. She didn’t own a computer and used libraries to try to research her condition. She found that very little information was available. Since then, Patsy has joined the computer age and takes part in an on-line support group of FMD patients finding that they are a great source of comfort and information.

Patsy has recently honored her support group and the FMDSA in her newly published book “An Arranged Departure”. The story chronicles the life of her mother whose often turbulent life was filled with difficulties which she approached as mear “bumps in the road”. Her mothers strength, willpower, abundant love and faith where Patsy’s inspiration for this book. Patsy describes “An Arranged Departure” as the true and wonderful angelic
experiences her sister and her encountered the night their mother died of ovarian cancer.

In the front of her book, Patsy formally acknowledges her thanks to her support group, who along with her, battle Fibromuscular Dysplasia. She goes on to express her gratitude for the Fibromuscular Dysplasia Society of America and its founders and writes a definition of FMD for her readers providing yet another opportunity to raise awareness of her disease.

National Organization for Rare Disorders (NORD) Conference - 2006

FMDSA Founders, Richard and Susan Gould attended the 2006 NORD Annual Conference in Bethesda, Md., Sept. 28 to Oct. 1. This conference provides an opportunity for leaders in the Rare Disease Community and Patient Organization leaders to come together, learn from one another and seek solutions to the issues facing the communities they represent.

This year’s conference was co-sponsored by NORD (Nat’l Organization for Rare Disorders)and the National Institutes of Health/Office of Rare Diseases. The focus of the meeting was on the “Road Map for Rare Disease Research”. Leaders from several NIH Institutions, the FDA, Biomedical Corporations and Patient Advocacy Organizations presented at the conference and were on hand to answer questions during several open sessions. The panel of speakers at this meeting presented a wide variety of information from how to receive funding for NIH research, how to develop FDA approved treatments, how to arrange a collaboration between researchers, and how to begin genetic test development. These are just a few of the subjects on the agenda.

This is the 2nd NORD conference attended by Rich and Susan Gould. The conferences are an essential resource for the FMDSA. Continued education and the opportunity to meet with other organization leaders provide the tools necessary to keep FMDSA moving forward.

If you’d like to read more about the NORD conference or read the information presented
at the conference you can visit NORD at http://www.rarediseases.org.

FMD on TV - In May, health reporter Monica Robbins from WKYC/TV in Cleveland Ohio produced an information piece about Fibromuscular Dysplasia. The report focused on FMD as a cause of stroke and featured FMDSA Chairperson Pam Mace, and FMD survivor. Information about the signs and symptoms of FMD were presented in the story and WKYC/TV provided a link for viewers to learn more about Fibromuscular Dysplasia through the FMDSA as well as the National Stroke Association.

WKYC/TV is an NBC affiliated station with an estimated audience of 118,000 viewers of their 7:00 PM broadcast. In June we learned that the original report was picked up by 43 other NBC affiliates. Based on a marketing report provided by Video Monitoring Services of America (VMS), the FMD story was aired to an estimated combined audience of 1,090,098 viewers. VMS bases its audience estimates on the Nielsen Media Research, inc. findings.

Our office received calls from throughout the United States in response to this report. To our knowledge, at least two people have been diagnosed with FMD as a result of watching the report. In addition, the television coverage, we know of a radio report in Memphis, TN which featured the information provided by Monica Robbins. The radio station is owned by NBC.

Please take a few minutes to watch the interview available at the WKYC web site.

Kevin Meyers, MD Presents FMD to European Doctors - In May 2006, Dr. Kevin Meyers of the Children's Hospital of Philadelphia (CHOP) directed a week long seminar on pediatric nephrology to the Open Medical Institute in Salzburg, Austria. The Open Medical Institute is a program of the American Austrian Foundation. Its goal is to educate physicians and health care providers from countries in transition and foster their professional growth. Through week-long seminars, physicians update their knowledge and gain insight into new medical techniques.

Dr. Meyers lead a team of four Pediatric Nephrologists from CHOP to teach 36 doctors from Eastern and Central Europe the pertinent issues facing Pediatric Nephrology and the medical techniques used in diagnosis and treatment of these conditions.

One of the lectures presented by Dr. Meyers was on renal vascular hypertension (RVHTN) in children. In children, conditions that affect the kidneys and kidney vessels account for up to 80% of all causes for hypertension. The entire focus of the lecture was on fibromuscular dysplasia. Dr. Meyers is confidant that this lecture has increased the pediatric medical communities awareness of FMD and that it is this type of activity that will ultimately result in improved diagnosis, treatment and research into discovering what this condition is all about. Dr. Meyers is a Medical Advisor to the FMDSA.

European Genetics Conference - Brussels - In May, Pam Mace represented FMDSA at the European Human Genetics Conference in Belgium. Pam met with a group of researchers from the University of Ghent to discuss FMD and research aimed at identifying the gene responsible for the disease. As a result of this meeting, they have agreed to work with the National Institutes of Health on this project. FMDSA is cooperating with both the University of Ghent and the NIH to facilitate this collaboration. While at the conferences, Pam discovered Orphanet, the European Organization for Rare Diseases. They already had fibromuscular dysplasia listed on their website and have agreed to list FMDSA as a resource. Partnering with scientists and organizations in Europe will strengthen our own ability to achieve a better understanding of this disease. We look forward to updating you on this exciting project in the future.

Jeffrey Olin, MD Presents at Cleveland Clinic - Dr. Jeffrey W. Olin, FMDSA Medical Advisory Board Member, presented at the Cleveland Clinic Grand Rounds on March 23, 2006 to a large audience of physicians and nurses. Grand Rounds is when a medical specialist presents their perspectives on the etiology, diagnosis, prognosis, and treatment plan for a specific medical problem to promote dialogue within the medical community. Those who attended this session on FMD earned continuing education credits.

The objective of this presentation was to help practitioners understand how to review the clinical presentation of patients with fibromuscular dysplasia, differentiate fibromuscular dysplasia from other forms of vascular disease such as vasculitis and atheriosclerosis and discuss current treatment modalities from fibromuscular dysplasia of the renal and carotid arteries.

Pam Mace and Rich Gould from the FMDSA attended the session as Dr. Olin's guests. The session was enthusiastically received; many participants had questions for Dr. Olin following the presentation. Events like these are very important for raising the awareness of FMD and to develop a broader discussion on FMD treatment within the medical community.

The Goddess Fund - Pam Mace has published her story at the Goddess Fund website. The Goddess Fund is a nonprofit organization focused on research, prevention, and education programs surrounding stroke in women. Click here to link to the article.

NSA Adds FMD Article to Website - The National Stroke Association added an article on FMD to their website. The title of the article is "Stroke Survivor, Pam Mace Fights for those with FMD". Click Here to see the Article.

Kaiser Permanente - FMDSA Board Member, Pam Mace, has been interviewed about her history with FMD by Kaiser Permanente for Stroke Awareness Month and is featured in their April publication. This publication is sent to 84,000 Kaiser Permanente members. Click here for an electronic copy of the publication.

Kidney Beginnings Article - The American Association of Kidney Patients included an article on FMD and the FMDSA in their March/April magazine. You can go to their website and request a free copy of the magazine. Click on magazine (they have two magazines), then click on Kidney Beginnings and register to receive a free copy. Unfortunately, the article can not be read online.

FMDSA makes Time Square - On April 7th in Times Square, New York GE Healthcare celebrated World Health Day to encourage people to take responsibility for their health. As part of GE's awareness program, they broadcasted pictures from healthy people like you on a digital billboard 27 by 45 feet high. Pam Mace sent in her photograph entitled "Being My Own Advocate". All of the photos broadcast can be seen at the GE Healthcare website.

West Life Article - West Life is a regional newspaper covering the western suburbs of Cleveland. The article highlights Ashley Gribble's participation in the FMDSA Pedal for Progress fundraiser this year.