News

Scleroderma Foundation’s 2009 National Patient Education Conference in St Louis

On July 17–19th, over 350 people from around the country headed to St Louis, MO for the Scleroderma Foundation’s 2009 National Patient Education Conference.  The theme of “Gateway to Hope” set the tone for another successful convention to help anyone affected by Scleroderma. The sharing of medical information from expert Scleroderma physicians, as well as the sharing of understanding from so many other patients created an environment of hope in the future for so many.   

This year the Tennessee Chapter was proud to have eight people in attendance: the most attendees ever for our state.  Every year, we are proud to sponsor the trip for one of our dedicated volunteers, and this year that winner was Marilyn Green, a new chapter board member from middle Tennessee. Featured here are Marilyn’s thoughts as a first time attendee for the weekend’s meetings:   

The National Scleroderma Convention was great!  I met so many people and made interesting new friends. Some of those friends were a young woman, Lauren Duke, and her Mom Pam, from Florida; Lauren has Scleroderma and she told me about a pool party they held that raised over 50,000.00 dollars for Scleroderma.  Even with his connections as a physician, that was an inspiring total.

The Hyatt Regency was beautiful and we had a fireworks show every night.  Our hotel overlooked the Mississippi River and the famous St Louis arch.  A boat in the middle of the mighty Mississippi held fireworks which they would shoot off about 9:00 each evening.  I was on the 12th floor and had a front row seat.  It was awesome.

The seminars were very good. I did not get to all of them, but I chose the subjects that I was most anxious to learn more about for my own Scleroderma. 

Dr. Charlene Prather held a workshop on Managing GI involvement in Scleroderma.  She talked about Gastroparesis, which is how the gut slows down in Scleroderma, and noted esophageal involvement and Raynaud’s seem to correlate with each other.  She also talked about how you could have Precancerous Barrett’s esophagus (Metaplasia), and how the esophagus can harden and make it difficult to swallow.  There are several medications that can help the stomach and esophagus: Nexium and Prilosec are two.  She said these capsules could be emptied into applesauce to make them easier to go down.   Foods to avoid are peppermint, coffee, onions, garlic, chocolate and fatty foods.

Dr. Maureen Mayes held a seminar on Scleroderma 101.  She spoke about the basic information that many of us know but there was one thing that she pointed out that I had not heard before; if a patient has the SCL70 antibody in their blood-work they most likely already have lung involvement.  She said that immunosuppressive medications were good to help the symptoms of Scleroderma, and Methotrexate is one that she named.  They are finding that Cytoxan is not as helpful in fighting symptoms as they first thought. 

Dr. Thomas Medsger held a seminar on Scleroderma and Cancer.  Dr. Medsger made a point that Scleroderma and Cancer can go hand in hand.  Breast cancer is the most common malignancy reported and tends to occur within the first 2 years of onset of Scleroderma.  Other cancers he mentioned are Barrett’s esophagus, Basal and Squamous cell cancer, lung, ear, nose throat, tongue and non-Hodgkin lymphoma.  He noted the treatment of radiation in Scleroderma patients could result in damage to blood vessels and in reduced blood supply and necrosis (death) of tissues.  Radiation to the pelvis in a Scleroderma patient may result in increased risk of severe toxicity.  Radiation for breast cancer can result in morphea of the breast, and widespread morphea.

During the conference, Dr. Maureen Mayes’ staff worked the Scleroderma Family Registry & DNA Repository booth.  They drew blood from patient volunteers and those blood samples will be used in the research to find a gene that correlates with Scleroderma.  Marilyn Perry, Dr. Maureen Mayes’ assistant, drew my blood, and had some difficulty getting a good vein.  As I walked out the door, she commented not to let anyone see me.  I had tape and cotton balls all over my arms; it was a little comical. 

I would like to thank everyone for sending me to represent our Tennessee Chapter.  It was wonderful!  However, it was sad to see so many suffering from this disease.  I pray they will find a cure soon.

April Simpkins, Edward and Evette Britton enjoying the evening meal.

Myrna Simpkins and the wonderful view from our hotel rooms.

April and New York friend, Natalie Murdolo.

The Tennesseans who attended the conference: Cyndi Tieck, April and Myrna Simpkins, Marilyn Green, Edward Britton, Cancel and Marlette Carey, Evette Britton

Marilyn Green and April Simpkins wait to leave the hotel

2009 7th Annual Stepping Out to Cure Scleroderma Walk

The morning of June 13, 2009 was a time full of fun for all who came out to our 7th Annual "Stepping Out to Cure Scleroderma" Walk in Nashville.  Around 285 people joined us at the main event shelter in Centennial Park to help us fund research for a Scleroderma cure.   Around 25 volunteers, including Walk chair people Doug Blaise and April Simpkins, worked hard to make this year a success: from all the preparatory phone calls and business visits, to running around that morning setting up signs and balloons; they should be highly commended!  The morning started off chilly, but as with TN weather, the sun soon shot the thermometer upward.

This year, registration was a little more lively, as walkers were entertained by a talented up and coming singer, Angela Martinez, who is lending her talents to the Scleroderma Foundation’s fundraising efforts.  Angela was inspired by one of our board members and scleroderma patients, Cindy Tieck, to get involved with our 2009 Scleroderma Walk.  Not only did Angela get involved, but after meeting several other members with Scleroderma, she promptly went home and wrote a wonderful song, entitled “Right There” about the feelings of persons dealing with a chronic health problem, like Scleroderma.  She then generously decided to donate the proceeds from the song to the Scleroderma Foundation.  After she and her fiancé, Lucas Barella, performed several songs, they kicked the Walk off with “Right There” and urged people that with a donation to our chapter, they would be able to download this inspiring and beautiful song.

Rhori Johnston, evening anchor form New Channel 5 then got everyone energized to ‘Step Out to Cure Scleroderma’.  Most attendees walked about three laps around the beautiful park, while some just set in the shelter and caught up with friends or chapter happenings.  We so appreciated our many teams who walked in honor, or in memory of their loved one affected by Scleroderma!  They are the true stars of this day!!  The team distinction for most walkers went to ‘Zula’s Tribe’, in memory of Zula Kuertz,  Team Simpkins’, in honor of April Simpkins, the ‘Sugarfoots’, in memory of Jan Abercrombie, “Team Shirley’, in memory of Shirley Biggers; and there were so many more honorable mentions like ‘‘Team Marilyn,’ in honor of Marilyn Green, ‘J.R’s Team,’ in memory of Wilburn Lofty.  The prize for most money raised went to the ‘Sugarfoots’, ‘Sclera-Carey’, in honor of Marlette Carey, and ‘Charlie’s Angels’, in honor of Charles Cowell.

All that walking worked up appetites, so walkers were treated to good picnic food grilled by Richard Murray’s Chuck Wagon from Community Trust Bank, and snacks from Little Debbie and Purity.  The local Southern Bluegrass band, “Upstairs Monday,” was excellent entertainment as everyone piled their plates high. There was face painting for the young and the young at heart, the park’s plane and antique train to explore, and a fun balloon show for the children who were thrilled with their crazy animal balloons by magician Rodney Kelley.

And, the last part of the day saw everyone sure to be in the shelter for our famous door prize drawings, announced by our friend Rhori Johnston.  Despite the struggling economy, we had wonderful gift certificates from Cracker Barrel, Longhorn Steakhouse, Rafferty’s and so, so many more.   Several  stepped away with a door prize, but every walker stepped away with a T-shirt, a full belly, and a happy heart that they supported so many of us who are affected by Scleroderma.

Our total raised was $10,133, which was wonderful, but not quite as good as past years ($16,325 in 2008, and $20,100 in 2007.) With the struggling economy, and so many out of work, we can understand many are unable, or anxious to donate as much as previous years; but, please if you would like to give to our 2009 Walk, it is not too late!  Just mail your check to TN Scleroderma Chapter, PO Box 2844, Hendersonville, TN  37077, and be sure to write Walk in the memo line.  Thank you so much. 

We always look forward to catching up with all of our friends, as well as meeting new individuals and teams who inspire us all.   If you have never walked with us, especially if you are a friend or family member of someone who has Scleroderma, please come walk with us next year on the 2nd Saturday of June (June 12, 2010.)  We need you!  See you next year!

Photo Album

Spring Newsletter 2009 (PDF)

Tennessee Chapter Board Member Evette Britton (r) met with Caroline Diaz-Barriga. Caroline is a staff person in the home/district office of Rep. Bart Gordon (6th).

National Conference - Tennessee Chapter Attends Los Angeles Event

This year on July 25-27, 2008, four people from the Tennessee Chapter were able to attend the national Scleroderma Conference in Los Angeles, California. Our chapter again sent our president, April Simpkins, and her mother, Myrna Simpkins, Chapter secretary, joined her. Then, we also sponsored the trip for a dedicated volunteer; this was done by drawing names of our volunteers, and the happy winner was Evette Britton. Her husband Edward was able to make the trip with her. They had a wonderful time and Evette has written here about her experience.

Evette Britton’s 2008 National Conference Experience

On July 25-27 of this year, I was extremely fortunate enough to attend the Scleroderma Foundation's 2008 National Conference in Manhattan Beach, California. I arrived a day early and stayed a day later so that I would have time to sight-see. I saw things like the Hollywood sign, Mann's Chinese Theatre, the Kodak Theatre, Tim McGraw's star on the Walk of Fame and Fisherman's Village in Marina del Rey. I even stood on Rodeo Dr. My favorite things were the Manhattan Beach Pier, the Santa Monica Pier and standing in the Pacific Ocean at Venice Beach.

The conference opened up with a reception on Friday night. It was the first of many chances to catch up with old friends and make new ones and hear their stories. Saturday morning the workshops began with the welcoming session "Things Will Be Okay" an inspiring speech by Cindy Coney, who has lupus. She encouraged us to surround ourselves with people who love us, things that nuture our spirit, make us laugh, and make us happy.

The workshops I chose for the day included: Pulmonary Hypertension, Gastrointestinal Issues and Nutrition. My favorite session was Depression and Coping, again with Cindy Coney. She urged us to focus on maximizing life, minimizing stress by realizing that stress develops when the demands placed on us are greater than our resource; learning to decrease the demands placed on us and/or increase our resources is the key to dealing with stress. Ideas for increasing our resources include: breathe - take deep breaths; move - run, walk; find a relaxation technique that works for you; distinguish between things you do and do not have control over and just have fun! - learn to laugh. Suggestions for decreasing demand: simplify your life: get rid of "stuff," clear your calendar, set clear and consistent boundaries by telling others “NO,” schedule time for things that are important to you. Next, organize; I find it helps to organize chores into categories: things I won't do now, things I won't do later, and things I will never do. Finally, prioritize: think about what are the real priorities.

Saturday concluded with an evening Awards Banquet emceed by Chris Harrison, who is host of the TV shows"The Bachelor" and "The Bachelorette. It was Chris' birthday, yet he was kind enough to give up his own personal celebration to be with us. He is connected to the Scleroderma Foundation because his mother-in-law passed away with scleroderma. After a nice dinner, awards were given out to chapters and volunteers who had helped the Foundation throughout the year. Chapter baskets were raffled off; then the final event of the evening was the auction of 4 live Maine lobsters to be delivered to your door whenever you wanted them. The bidding unofficially started at $65 because Mick Jagger turned 65 that day. The official bidding began at $200 and quickly escalated to $2,200. I thought the auction was over until a guy at the table behind me stood up waving 5 fingers. His bid wasn't $2500, but $5,000. SOLD!!!! I later discovered that he'd bought the lobsters, not for himself, but for his doctor. I love my doctors, but WOW!!! what a wonderful, kind thing to do.

Sunday there were only three workshops before the closing presentation by Dr. Dan Furst, who has spoken at one of our TN seminars. My favorite session was by a lady whom I consider a new friend Mary Ann O'Neil. When we met on Friday night, I had no idea that she was conducting a workshop, but I'm so glad she did. Her workshop was ‘Humor- A Healthy Alternative’, and she titled her speech "Jest for the Health of It". I learned that it's okay to laugh, even though I'm falling apart. She heard someone say that laughter was like inner jogging because when we laugh all of our insides move. Mary Ann had a good quote. I'm not sure if it's hers or someone elses, but here it is, "Laughter won't put years on your life, but it will put life in your years." I know there have been times when I could not have gotten through if it were not for laughter. This was an excellent workshop which I, and all in attendance, truly enjoyed.

I came home from my conference experience wishing that I could have stayed longer. It's really comforting to be surrounded by people who truly understand what you're going through. I can't wait to attend next year's conference on July 17-19 in St. Louis, Missouri. For me it will be a five hour drive, but I'm going to do everything in my power to attend. How about you? Will you "meet me in St. Louie?" I promise you, it will be a worthwhile experience you will never forget.

Photos