AARDA Blog

Celebrity autoimmune disease advocates and “virtual walkers” pitched-in with support. More than $60,000 has been raised for research by the American Autoimmune Related Diseases Association’s (AARDA) “Linking for a Cure” campaign. The campaign walks were held in the Midwest (Chicago) area, the TriState (NY) region and the Washington DC Metro area.

In a show of support, “Army Wives” star and AARDA national spokesperson, Kellie Martin, attended the DC Walk and “American Idol” alum Leslie Hunt performed at the Midwest Walk.

The 50 million Americans who suffer from autoimmune disease still have the opportunity to get involved and raise funds to find a cure through virtual walks. A virtual walk can occur any place and at any time. The walk can be held by walking around the local track or around the neighborhood.

“Autoimmune disease affected my family in a terrible way when I lost my sister and best friend, Heather, to lupus in 1998,” explains Kellie.  “Since Heather’s death, I have worked with AARDA to raise awareness of autoimmune diseases.  Now I have the opportunity to invite others who have been affected to join the fight – and walk.”

Virtual walkers can earn great prizes for their efforts. The main goal is to urge patients, their families and friends to join together in an effort to bring awareness to the over 100 autoimmune diseases that plague Americans. “Autoimmune diseases run in families and they have a common thread that links them all together,” says Kellie.  “This is an incredible opportunity for families touched by these diseases to ‘link together’ in support of autoimmune disease research and patient services.”

AARDA thanks all of its participants for their dedication and fundraising. It is our hope that participants realize the difference that they are making in the lives of the more than 50 million people suffering from autoimmune disease. For more information about a virtual walk, visit AutoimmuneWalk.org.  

Imagine my excitement as the first annual Find the Common Thread Pajama Day for Autoimmune Disease Awareness was held on February 29, 2012 - International Rare Disease Day. My reasoning for this date was two-fold. One was that so many AD's fall under the Rare Disease umbrella (mine included) and there is so little awareness out there about Rare Disease. My thought was that once we get enough awareness out there, we can pull out from Rare Diseases and become our own strong, powerful group. My second reason was that I work best under pressure and having only a couple of months to pull it off would be of benefit to the whole idea. I wrote hundreds of emails to various celebrities, to various organizations, to pajama manufacturers and wholesalers, to anyone I could think of that would be remotely interested in supporting the cause. Most were unanswered but some were and slowly we moved forward. I did get some media coverage before the event, but I knew that it would be after that people would sit up and pay attention, and this would launch us into a whole new world for next year.

The town that I live in is a small Rocky Mountain town of 4500 with over 2,000,000 visitors yearly. We're a tight community. When I got sick I was blown away by the support I got from every corner of our town. I wasn't sure how my idea would fly, but once again, I was blown away by my neighbours and friends. On February 29th, we had a Pajama ski race, a Pajama run with world class ultra-runner Tracy Garneau, we had Pajama Yoga, we had Pajama cross country ski, we had a Pajama Noodle Night, we had a Pajama Fashion and Dance show that was so great - the high school kids that danced were amazing (they only had barely two months to put together the routines as the songs were chosen by my sister and me) and the models were awesome - regular people who put themselves out there for a cause. Local vendors supplied the PJ's for the fashion show without any expectation. Unreal! The night was topped off with PJ parties in various pubs and our local night club. It was a screaming success. As one friend mentioned on Facebook first thing in the morning, "It's like Dr. Seuss downtown". There were a few confused tourists trying to figure out what's going on as they kept getting passed by PJ after PJ after PJ. The townsfolk went to work in their PJ's so we had banks, grocery stores, video stores, our hospital staff, the government employees, train engineers, hotels, restaurants, massage studios, hair salons... it was everywhere, and people were totally into it.

If you would like more info on PJ Day or would like to see photos and videos you can check it out at www.findthecommonthread.com. And here's the editorial from our local newspaper today (March 08, 2012) http://www.fitzhugh.ca/editorial/6052-an-overwhelming-if-not-surprising-success

Let's all play together in our PJ's next year and change the world for the better.

About our Guest Blogger Marta:

My name is Marta and I was diagnosed with Wegener's Granulomatosis (WG) in May of 2010. My struggle to get a diagnosis is very similar to many of your struggles. Being made to feel like a hypochondriac, questioning my own sanity and ability to endure pain and being vindicated with a diagnosis only to find out that there is no cure and the treatment is almost as nasty as the disease itself. Wegener's is one of the rare ones on the list of AD's - 1 in 40,000, so initially it was hard to find anything that would give me hope for the future. Once I got my bearing straight and enough strength to use my fingers on a keyboard, I started my own blog (www.weggiesunite.blogspot.com). I saw the power of the internet in helping unite people with rare afflictions and give them strength and hope. I also decided that because of the lack of information on WG that collecting stories from WG patients (Weggies not Wedgies) and publishing an anthology would be an amazing aid to the newly diagnosed, their families and perhaps even the medical profession.

The Washington DC Walk was a huge victory thanks to people like you! Walk Ambassador and “Army Wives” star, Kellie Martin, encouraged participants as they lapped, or “looped”, around the AARDA Autoimmune Walk route. For more than 10 years, Kellie has served as AARDA’s Spokesperson. She felt compelled to get involved after losing her then 19 year old sister, Heather, to lupus in 1998.

The Autoimmune Walks are AARDA’s new signature awareness and fundraising campaign with a twist. All three Autoimmune Walks promote routes formed in non-traditional loops to encourage “circling” the length of the route to show solidarity for the loved one or loved ones affected.

At each Walk, participants are given a paper “link” to write their link to autoimmune disease. What autoimmune disease(s) are you representing? Are you walking for yourself? A family member or co-worker? These links will be displayed during the opening and closing ceremonies at each event. The links will offer a visual to the impact that autoimmune disease has on the world.

There are two remaining Walks – Midwest (Chicago), Saturday, June 2 and TriState (New York), Sunday, June 24. If you aren’t in an area where a Walk is taking place, consider becoming a Virtual Walker. You select the day and route to walk locally. Please contact the AARDA office if you want to organize a Walk in your area.

To register or to receive more information regarding the Walks, call 1-855-239-2557; visit www.AutoimmuneWalk.org; or contact Info@AutoimmuneWalk.org. Visit us on Facebook: www.facebook.com/AutoimmuneWalk. Follow us on Twitter @AARDATweets. Use the hashtag #AutoimmuneWalk to tell us how you are preparing for the Walks. Using the hashtag, feel free to post pictures documenting you and your team getting ready for the Walk.

Two longtime AARDA volunteers have received the Star Volunteer Award for outstanding service on behalf of AARDA and autoimmune disease patients.  Presenting the awards at a Board of Directors dinner in Dearborn, Michigan, President and Executive Director Virginia Ladd thanked Noel R. Rose, M.D., Ph.D., and Robert Meyer, CPA, for their support beginning in AARDA's earliest days.  Both have played crucial roles in AARDA's development.

Since 1992, Dr. Noel Rose has been a source of advice, encouragement, and active participation.  Starting as a member of AARDA's Scientific Board, he became Chairman of that Board in 1995 and now serves as Chairman Emeritus.  Dr. Rose is a frequent speaker at AARDA public forums and scientific meetings.  He has served on planning committees, and he regularly attends AARDA Board meetings to report on autoimmune research developments, participate in strategic planning, and lend guidance.

Dr. Rose always has time for AARDA even though he has a full schedule as Director of the Center for Autoimmune Disease Research, Bloomberg School of Public Health, at Johns Hopkins University, in Baltimore, Maryland; mentors medical students; holds the positions of professor of pathology and professor of molecular microbiology and immunology at Johns Hopkins; and continues his prolific writing.

Dr. Rose's pioneering research some 50 years ago was instrumental in establishing the concept of autoimmune disease and helped immunologists understand, for the first time, that the immune system is capable of directing a response to health tissues and organs of the body, not just to invading foreign viruses and bacteria.  He is co-editor of the classic textbook The Autoimmune Diseases, now in its 4th edition; has published more than 760 articles in peer-reviewed journals; has edited or co-edited some 72 books; and has served as an editorial board member of more than 21 journals.

Also honored as an AARDA Star Volunteer was outgoing Treasurer Robert Meyer, CPA.  Mr. Meyer, a charter member of AARDA's Board of Directors and immediate past Chairman of the Board, has served AARDA through the years as Board member, Chairman of the Board, and Treasurer of the Association.  He serves on AARDA's Corporate Advisory Committee and the National Resource Development Committee.  In AARDA's early years especially, the road between Fort Wayne, Indiana, and Detroit, Michigan, was well traveled by Mr. Meyer as he helped in setting up the financial records aspect of AARDA work and attended Board meetings.  Still true to AARDA service, Mr. Meyer slowly phased out his office time with the organization as he assisted in closing out the fiscal year and transitioning AARDA to the new treasurer.

In his "other" life, Mr. Meyer is president of Fort Wayne Insurance Services, Inc., in Fort Wayne, Indiana.

We in AARDA are fortunate to have really great volunteers, and we are pleased that we can take this opportunity to honor two of them--Dr. Noel R. Rose and Robert Meyer--with the Star Volunteer award.

Excerpt from "InFocus" -- written by Eula Hoover

AARDA Guest Blogger Sarah Downing takes poetic licence with her autoimmune story in these poems inspired by her life with autoimmune disease:

My 6 year old sat beside me on the couch, tears streaming down her little face. “When we start talking about this my eyes water like I'm gonna cry!” she wailed, and buried her face in my arm. My 8 year old was on the other side of the room, also in tears. She had begun this particular conversation about the dreaded “this” (my declining health) by asking me if I was going to die.

I suffer from multiple autoimmune diseases, including RelapsingPolychondritis, Meniere's Disease, and fibromyalgia. I am more often than not in pain, shaking, dizzy, and nauseous. I am currently on medical leave from work. All this means that my health problems are very visible; I can't avoid talking about them even if I wanted to. I don't promise my kids I'm not going to die; I will someday. I do reassure them that there are plenty of people who will be here to take care of them, that they will go to the same school and participate in the same activities. Young children's fears are often practical in nature and simple explanations are key. According to experts, talking about it with your kids is always the best, if not most comfortable, route.

Everyday Life and Routines

How do you handle the needs of a family when symptoms and side-effects leave little energy for household tasks? My main tips are to stay organized and ask for help! Since others often run errands for me, I keep lists of what I need from various stores, along with applicable coupons. When someone asks, “I'm running to Target, do you need anything?” I can quickly scan my lists and answer. Meal prep is another big area that requires organization. A detailed grocery list and menu plan is a must! If you have multiple people in your home to assist with childcare, etc., consider a Home Management Notebook . Friends and family want to help, they just need suggestions. When groups of people (such as coworkers or a church) ask how they can help, suggest restaurant gift cards. Neighbors? Lawn care. Ask the parents of your kids' friends to host playdates and provide the transportation.

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About Guest Blogger Rebekah Doak:

Rebekah Doak holds an MEd. in Curriculum Design and is an Early Intervention Specialist, serving families touched by autism through the utilization of the P.L.A. Y. (Play and Language for Autistic Youngsters) Project.

She suffers from multiple chronic health conditions including Relapsing Polychondritis, Meniere's Disease, and fibromyalgia. Her life is a continuous balancing act among family, work, and personal pursuits.

She is passionate about a great many things- books, crafts, helping those with autism and chronic illness, family, and photography, to name a few.

Rebekah blogs about her passions and finding inspiration and creativity in the everyday at www.reflectionsbyrebekah.blogspot.com. She lives in Ohio with her husband and two daughters.You can contact her through her blog or at rdoak03@yahoo.com.

My name is Cheryl Crow and I am a 30 year-old Masters in Occupational Therapy student and swing dance instructor living in the San Francisco Bay Area. The above video details my experience going from captaining my college soccer team to not being able to open a jar of peanut butter, and how the diagnosis of Rheumatoid Arthritis led me to a lower impact form of exercise: swing dancing.

In addition to what is above, I would like to share that the biggest challenge with having an autoimmune disease for me is not the pain, but rather the side effects of the immunosuppressant medication. I require the medicines in order to life the joyful life I want to live, however they leave me more susceptible to infections and general illness than the average person.

I am grateful to the AARDA and any other organization dedicated to advancing research for autoimmune diseases, and I hope that in my lifetime there will be better solutions for the many others who do not respond well to the current medications.

As you may have heard, Congress has appointed a “Super Committee” to find ways to reduce government spending. Although an important task, we must ensure that federal cuts don’t harm critical programs for people with chronic diseases and disabilities.

This is why the American Autoimmune Related Diseases Association (AARDA) has joined other leading patient organizations that are members of the National Health Council, to ask Members of Congress to protect essential health services from cuts by the Super Committee.

We are urging our grassroots and their family members to call Congress Wednesday, October 12, through Friday, October 14, and tell them not to let the Super Committee make cuts that would hurt patients! -- Once you've made your call email us to let us know at advocacy@aarda.org. 

Call the toll-free phone numbers below between  October 12 and October 14 between 9:00 a.m. and 5:00 p.m. Eastern Time. Your calls will be redirected to the appropriate offices.

• Call 1-866-414-6376 to reach your U.S. Representative. You will hear a pre-recorded message. Enter your zip code using the numbers on your touch-tone phone. You will be connected to your Congressperson’s office.


• Call 1-866-414-7494 to reach your U.S. Senators. Again, you will hear a pre-recorded message and will need to enter your zip code. You will then be asked whether you want your call to go to your state’s junior Senator or your senior Senator. After making your selection, your call will be directed to the appropriate office. You should make a phone call to each Senator’s office.

Here is a sample script you can use:

Hi, my name is ________.  I’m a voter from __ (give your home town) __ as well as an advocate for the American Autoimmune Related Diseases Association (AARDA).  May I please speak to the staff person who handles health care issues?

Today, the American Autoimmune Related Diseases Association (AARDA) is joining with other patient advocacy groups that are members of the National Health Council to ask Members of Congress if they know how deep cuts in health spending will impact patients. 

Reducing investment in  research, may save money now, but this will lead to even higher costs in the future if my health and the health of other Americans decline as a result of the cuts. Protecting investments in health includes areas such as NIH research funding to support basic autoimmunity research initiatives.

I would like to discuss how cutting spending would impact me and my family. Share your personal story.

Please ask Representative/Senator ________________ to consider the impact that cutting health spending would have on me and the rest of the nation.

Thank you.

Researchers at the University of Western Australia�s (UWA) School of Biomedical, Biomolecular, and Chemical Sciences have found convincing results that show a strong link between infertility and antibody causation. In an effort to produce a contraceptive for research mice, an accidental discovery was made. When mice were given a modified virus which expressed glycoprotein zona pellucid 3 (ZP3), which serves as an important ingredient in the development of ovarian follicles and allows fertilization to occur in women, the mice�s immune systems produced antibodies against the protein.

Within 14 days, the mice showed signs of reduced fertility; and within 21 days, complete infertility. These findings, according to Dr. Megan Lloyd, head of this particular research study, show that it is indeed possible that antibodies to ZP3 can contribute to ovarian damage in women. ��there are a number of women who have infertility of unknown cause and a proportion of these women do have antibodies to ZP3,� according to Dr. Llyod.

While these results shed light on a progressively difficult issue for women, more research is required to fully understand this process. Furthermore, according to Dr. Lloyd more work needs to be done in the early stages of autoimmune disease. During these stages, there is less likelihood that further damage has occurred to the ovaries and researchers can begin to understand what happens to the antibody specifically and whether it induces other parts of the immune system to act within the ovary.

Read more...

AARDA is pleased to announce that Virginia Ladd, AARDA's President and Executive Director has received the prestigious Heritage Award of the Johns Hopkins University Alumni Association.  The award was presented during the 2011 Honors and Awards ceremony, at the Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, by Michael J. Klag, M.D., M.P.H., Dean.

The JHU Heritage Award reflects gratitude and appreciation to those alumni and members of the Hopkins family who have contributed outstanding service to the progress of the University over an extended period of time.  A letter to Mrs. Ladd signed by Ronald J. Daniels, President, Johns Hopkins University, and Raymond W. Snow, President, Johns Hopkins University Alumni Association, states, "Your dedication to the continuing progress of the Johns Hopkins University has created a lasting legacy for Johns Hopkins and future students."

In accepting this Johns Hopkins Heritage Award, Mrs. Ladd acknowledged the assistance of dedicated individuals, medical professionals and others, who have made possible these years of her own support for Johns Hopkins University in the areas of autoimmune disease research and medical student education.

What would you do if you were bedridden with days and days of nothing to do?  Would you explore every crack in the ceiling?  Would you watch shadows come and go?  Author Elisabeth Tova Bailey had a much more interesting diversion.  She became acquainted with a snail who came as a gift along with a potted wild violet plant.  Ms. Bailey says, "The isolation and limits of illness can be very tough, something even tougher than illness itself.  She adds, "The snail was very critical in getting me through a hard time.  I think each of us, in surviving any difficult life challenge, has to find a way to stay connected to the world as that connection is what sustains us."

What led Ms. Bailey to write the book?  She explains, "I felt I owed the snail a biographical thank you and partly because I felt the story would be of help to other people going through a rough time."  Readers will learn that Ms. Bailey and her little visitor have much in common: both are confined to their homes and are greatly curious, both make the most of it by exploring the magic of the world around them, both move slowly and accomplish much.

The Sound of a Wild Snail Eating, though a book of natural history--the life and culture of an individual wild snail--profoundly captures the author's life with a debilitating chronic illness.

--Algonquin Books of Chapel Hill, a division of Workman Publishing, New York, hard cover, 191 pp., $18.95

---Author website: www.elisabethtovabailey.net

Book Reveiw by Eula Hoover, AARDA

Once more AARDA has sponsored diversity summer interns in a program at Johns Hopkins University.  This past summer five young students had an opportunity to study, thanks to grants from AARDA.

One of the students, Bobby Brooke Herrera, has written to AARDA Executive Director Virginia Ladd: "On behalf of the interns, I would like to thank you for your hard work and consideration.  The AARDA is not only a positive organization but also an outlet that has allowed my companions and myself to participate in a wonderful program at Johns Hopkins University.  I think I can say that we are all very interested in autoimmune related diseases and hope to continue successful research in the field."

Thanks to our generous donors, we are able to lend support to these young students who, it is hoped, will be the autoimmune researchers and physicians of the future.  We are grateful not only to our donors but also to the Johns Hopkins University staff, especially Dr. Noel R. Rose, Director, Center for Autoimmune Disease Research, for designing and facilitating this program.

The National Institute of Environmental Health Sciences (NIEHS) recently put out a call for the public to suggest �Visionary Ideas� that would help to shape the agency�s strategic planning process for the next five years.  This annoucement set AARDA in motion � spurring us to inform the public of the issue and getting out the vote!  We made this effort because while it is widely understood that environmental triggers are involved in the onset of autoimmune disease, not enough research has been done in this area.  Because autoimmune diseases have been proven to be on the rise in the U.S. and around the globe, it is our belief at AARDA that environmental triggers in autoimmunity is an area on which NIEHS must focus more resources if we are to find answers. 

We are proud to announce that for those hundreds of you who took the time to vote on AARDA�s �Visionary Idea,� your voices were heard and we were successful in securing the #2 spot out of over 130 ideas posted!  This is quite an accomplishment,  one that we could not have achieved without the assistance of AARDA supporters and advocates.  We still have much work to do throughout this process to ensure that this idea does indeed translate into the dispersal of additional resources in the area of environmental  triggers and autoimmunity, but this first step will ensure that our voices cannot be ignored.

Read AARDA�s �Visionary Idea� Submitted to NIEHS

A rapidly expanding body of science is showing that the environment we live in has many diverse effects on triggering the onset of disease in humans. Impacts on health go far beyond the conventional notion of �bad� substances in the environment causing disease while �safe� substances do not cause disease. The burgeoning field of epigenetics is demonstrating clearly that even supposedly benign chemicals can turn specific genes on or off. So, DNA is no longer the sole determinant of disease propensity. One must also look at which genes are active to predict a person�s future health.

Autoimmune disease research has clearly demonstrated that all types of chemicals and non-chemicals in the environment can trigger the onset of one or more of the genetically interrelated family of autoimmune diseases. Potential triggers include �harmless� chemicals, foods, medicines, and even sunlight, in addition to bacteria, viruses, and hazardous chemicals and pollutants. This is why identical twins growing up in the same household have only a 30-50% concordance for autoimmune diseases. If environment were not a major factor in autoimmune disease onset, we would expect to see concordances close to 100% since the twins have identical genetic make-up.

There is a growing body of scientific and clinical evidence of overlapping etiologies between immunodeficiency disease and autoimmune disease, and cancer and autoimmune disease. For example, skin cancers and certain autoimmune diseases can be triggered by exposure to sunlight. Another example indicative of overlapping disease triggers is the increase in both autoimmune thyroid disease and thyroid cancer after the Chernobyl disaster due to radioactive iodine exposure.

Therefore, AARDA strongly recommends that NIEHS take a leadership role in studying the full range of potential interactions between diseases (cancers, autoimmune diseases, etc.) and the much wider range of environmental triggers that we currently study. In addition to first order interactions, we strongly recommend that NIEHS study synergistic interactions among environmental factors and disease, e.g. while radon and cigarette smoke individually can trigger cancer, exposure to the combination synergistically increases cancer risk. The impact of the recommended research direction will have huge impacts on improving human health as we reach a more complete understanding of all the environmental triggers causing onset of many diseases.