Super Hero - Sue Byrnes

In the voting modules on the Squidoo SuperHero Project lens "Super Hero - Sue Byrnes" place at the very top for these categories:

Everyday Super Hero Facing Incredible Odds

Super Hero Activist

Charity Leader Super Hero

In 1994, Sue Byrnes' 22-year-old daughter, Andrea, was diagnosed with a rare lung disease called lymphangioleiomyomatosis, better known as LAM. LAM affects almost exclusively women and strikes in the prime of their lives, as they begin their careers and start families. Sue immediately turned to medical literature for information and answers about the mysterious disease that had stricken her daughter and found practically nothing - no studies of LAM, no resources, no support groups and, basically, no hope. And so began her new life mission.
Sue quickly learned that she would need the help of Congress to call attention to LAM. Driven by the love for her daughter, she initiated the Labor of Love campaign. Sue wrote to every known LAM patient and contacted women's organizations, churches, and schools, encompassing over forty states. Approximately 11,000 members of the Ohio Education Association and more than 1,000 doctors joined the campaign, asking their Member of Congress to support a LAM registry.

Sue and her supporters successfully lobbied Congress to convince the National Heart, Lung and Blood Institute (NHLBI) at the National Institutes of Health (NIH) to develop a LAM patient registry, including a tissue bank, that would help physicians and scientists become more knowledgeable about LAM and stimulate research. In addition to a LAM registry of patients, the Foundation encouraged NHLBI to initiate a LAM Protocol, where LAM patients are evaluated every six months at no cost to the patient. The LAM Foundation has formed a model collaboration with the NHLBI, which has invested over $20 million in LAM.

In 1995, less than a year later after Andrea's diagnosis, Sue and her husband, Fran, established The LAM Foundation, now the driving force behind the search for effective treatments, and ultimately a cure, for LAM. The Foundation has also become the education and support network for women affected by LAM, and a trusted resource for health care professionals and scientists.

More than 2,000 women with LAM have been identified as a result of the Foundation's efforts, but scientists now estimate that as many as 250,000 women worldwide may have LAM, but are currently undiagnosed or misdiagnosed with asthma, emphysema or pulmonary bronchitis.

In this short period of time, The LAM Foundation has raised over $10.7 million and directed the majority to research. These funds have contributed to three major scientific breakthroughs, including the first evidence of a genetic link to LAM, the identification of a LAM gene, a molecular explanation for abnormal smooth muscle cell growth in LAM, and the first-ever LAM treatment trial. The LAM Foundation continues to be actively engaged in identifying potential targets and treatments for LAM. The most promising treatment identified through this work is now being studied in a LAM treatment clinical trial, the MILES Trial.

Sue is a lifesaver. I was diagnosed in 1993 about 27 years after my first symptoms and a long period of stability. When I first heard the term lymphangioleiomyomatosis, I was recovering from having my right kidney removed due to a large aml. I was 49 at the time and convinced I would never live to see 60. About 3 years later I learned about the LAM foundation and e-mailed Sue. I was surprised to see she was in Cincinnati...my hometown. She phoned me that night and we talked for about 20 minutes. We spoke of the NIH protocol and she convinced me to apply. That was in April...by July I was headed to Bethesda and scared of what I would learn. I left NIH 5 days later with a renewed sense of hope...this was not the death sentence I had originally thought. If I had not made the connection, I don't think I would have known all I know about LAM...at least early on. When I first met Sue in person about 9 months later, I couldn't believe all that energy and caring was packed in that diminuitive body.

The more I got to know Sue, the more my respect for her grew. She set her mind to a purpose and never let anything get in the way. I don't think the concept of obstacles is in her thinking process. She is phenomenal...a force with which to be reckoned. How many of us would take on the government to obtain funding for a little known disease? How many would devote their lives to finding a cure for this disease? How many would run a foundation from their own homes, devoting many hours each day to helping women with LAM?

If you look up selflessness in the dictionary, you will find a picture of SUE BYRNES.

She will forever be my hero!!!

Sharon Eaves
Kenosha, WI

I never met a real life super hero until 1999. That was the year my doctor told me I had a rare lung disease called lymphangioleiomyomatosis or LAM for short. My doctor called me two days after my initial appointment and said we are 95% sure this is what you have. I had to have him spell it out. He said here is the number of a woman to call who can help you. That woman was Sue Byrnes director of The LAM Foundation. I will never forget the first time I spoke to Sue. I was so fearful of what the future would bring. Would I be there for my four children? Sue was a voice so calm and caring. She talked about the research that the foundation was funding and the hope that a treatment would be found. She connected me with other LAM women who could answer my questions, quiet my fears and provide support.

Sue gave up her teaching career to work full time to find a cure for a disease that had stricken her own daughter in 1995. Her dedication and hard work has resulted in many scientific breakthroughs in LAM. There is real hope because Sue never stopped. She is a Super Hero to all the women diagnosed with this devastating disease.

Madeline Nolan

Sue Byrnes has been the most terrific, unselfish, dedicated woman I have ever met! She drops everything to speak to a newly diagnosed Lam patient no matter what time of day or night it is. She started and had the LAM Foundation office in her own home until last year (I think maybe 2 years). Sue Byrnes made all of her hard work for us Lammies seem effortless. Sue has gone to great lengths for us she quit her job as a teacher, she went to Congress to get money for trials, Sue initiated the NIH taking our cause and starting the protocols. To me Sue has been a God send. I know I can always count on her! When she created the Lam Foundation she thought of everything! We have an unbelievable Listserv allowing us to keep intouch with other women going thru the same or similiar issues. The Lamposium is a unbelievable experience that she with the help of others created. Where else can you go to learn about your disease and be able to ask questions...and get answers, meet the scientists, doctors, other Lam patients and their families.

Jackie DesRoches RI Diagnosed January 2000

I think Sue Byrnes is the most unselfish, giving and caring person I have ever encountered.
She gave us all a lifeline when we were diagnosed with LAM. There was no information out there for us to even read about except a small article in the medical book in the library which
told me I would probably be dead in 10 years of diagnosis. When I contacted the LAM Foundation by a letter she called me at home. She lives in Cincinnati, Ohio and I live in London, Ontario, Canada. I was so thankful and amazed that she called me. We spoke for some time. This woman deserves every way we can to thank her.

Ann Bowman

October 18th - A Breath of Hope Fall Silent Auction Benefit - Chicago
7:00 pm - 11:00 pm
Mars Gallery in the West Loop of downtown Chicago, IL
1139 W. Fulton Market
Chicago, IL 60607-1220
Tickets are on sale now so get them while they are available as space is limited. Ticket price is $80 and includes open bar, hors d'oeuvres and dessert.
Visit The Midwest Friends of The LAM Foundation website: www.friendsoflam.org to buy tickets.
Questions: Please contact either Jennifer Seuring: jrseu71@yahoo.com or Carla Galvanoni: cgalvanoni@yahoo.com

Sally Foster - Online Fundraiser - Deadline November 3, 2008!
If you like to shop AND donate to The LAM Foundation, please visit the Sally Foster website at http://www.sallyfoster.com/.
%u2022 Go shopping
%u2022 When/if you purchase anything, go to "Group/Account Number"
%u2022 Go to "School/Group Account Number and enter #865903*
%u2022 You will see "Eustis Friends of The LAM Foundation"
%u2022 Continue through checkout

Sally Foster offers excellent quality totes, gift wraps, chocolates, home décor and MORE!
50% of your purchase supports The LAM Foundation.
*You MUST enter the number 865903 in order for the Foundation to receive the proceeds.

You will pay shipping on all orders under $70 but shipping is FREE for any order over $70 so get all your friends and family to make one big purchase to help The LAM Foundation!
If you have any questions, please contact Amie Powers at apowers@thelamfoundation.org.

Lord & Taylor Benefit Bash
The LAM Foundation has been chosen by Lord & Taylor Department Stores to shop for a cause! The Benefit Bash is a special day of shopping, events and discounts benefiting local area charities. The LAM Foundation will be represented in FOUR stores:

Manhasset, NY Tuesday, October 21, 2008
Contact: Jodi Waxman at jodikw810@aol.com

Ridgewood, NJ Tuesday, October 28, 2008
Contact: Amy Fabano at 201.391.1191 or afab02@optonline.net

Stamford, CT Thursday, November 13, 2008
We are still looking for a contact person in this area!

Eastchester, NY Tuesday, November 18, 2008
Contact: Gloria Eiseman at 718.548.1847 or gloria.eiseman@gmail.com

For more information about these fundraising (SHOPPING!) opportunities, please contact the representative closest to you OR you can click on the following link:
http://www.lordandtaylor.com/eng/newsEvents/benefitbashinfo.cfm

October 18th - A Breath of Hope Fall Silent Auction Benefit - Chicago
7:00 pm - 11:00 pm
Mars Gallery in the West Loop of downtown Chicago, IL
1139 W. Fulton Market
Chicago, IL 60607-1220
Tickets are on sale now so get them while they are available as space is limited. Ticket price is $80 and includes open bar, hors d'oeuvres and dessert.
Visit The Midwest Friends of The LAM Foundation website: http://www.friendsoflam.org/ to buy tickets.
Questions: Please contact either Jennifer Seuring: jrseu71@yahoo.com or Carla Galvanoni: cgalvanoni@yahoo.com

November 1st - A Day of Discovery Gourmet Tasting Tour - Philadelphia,
3:30pm - 6:30pm
Please arrive by 3pm to allow for check-in and directions
Valanni Restaurant for Tapas & Sangria
XIX (Nineteen) at the top of the Bellevue for an Artisanal Cheese Program
Solefood at the Loews for hors d'oeuvres and raffle
The festivities begin and end at SOLEFOOD
1200 Market St.
Philadelphia, PA 19107
Tickets are $95 per person and space is limited
Questions: Please contact Eden Pontz at eden.pontz@gmail.com

**Please check back soon for more information**