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News from Piedmont Support Group

The Piedmont Support Group heard from Dr. Gladue in the previous meeting on June 15, 2017. 

Leaders Jerry and Kay Misik said, "Thank you for attending our latest support group meeting and committing (and sacrificing) the necessary time to prepare for it.  You were a resounding success!  You were so patient awaiting your turn at the podium.  You were eloquent, knowledgable, responsive, and extremely helpful to each support group person in attendance.  We hope you continue to share new and helpful information concerning the causes and the cure for Scleroderma with us as they develop in the future."

 A note to Support Group Members: Please help identify speakers (or specific areas of interest) we may invite to future meetings. Our aim is to learn as much as possible from experts in the various fields of autoimmune diseases.

The Misiks also thanked Ms. Charity Tolson, Customer Service Manager for Harris Teeter at Stockbridge Commons, located in Tega Cay/Fort Mill.  They said, "She has been cooperative and supportive of our group for many months by providing us with trays of fine quality meats and cheeses along with buns for our support group meetings.  We appreciate your support, Charity, and in turn, we will support Harris Teeter as much as possible in the future."

The next support group meeting is scheduled for Thursday, September 14 at 6 p.m. at the Piedmont Medical Center, Rock Hill, SC.  We look forward to seeing you all then.

Kay & Jerry Misik can be contacted at mjmisik32@comporium.net.

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SPRING 2016 NEWSLETTER

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 Hello to Everyone from your South Carolina Chapter Board.  Spring has sprung in the Upstate and we are covered in dusty yellow pollen.  The flowers are beautiful, though!

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 The Sixth Amy K. Parrish Patient Education Conference was held on Saturday, January 30, 2016 and it was a wonderful day!   Tracy M. Frech, M.D. was our Keynote Speaker, speaking on Gastrointestinal Issues and the Importance of Personalized Medicine.    Other speakers were Drs. Faye Hant and Michelle Ravenel speaking on Oral Health, Dr. Carol Feghali-Bostwick on New Drug Development at MUSC, Dr. Richard Silver with the latest news from MUSC and Nurse Educator Paula Erwin-Toth on Fragile Skin Care.     We tried a new caterer for lunch, Dish & Design from Mount Pleasant, SC.   Everything was delicious and we have already booked them for 2017.    Wildflour Pastry and Starbucks provided our tasty breakfast pastries & savories and hot coffee for the sixth year in a row.  Actelion Pharmaceuticals provided warm blankets, socks and wristies for our Scleroderma patients.      We had fabulous gifts for all patients in our take-home bags:   Basic Bites by Orteck Therapeutics; MightTeaFlow products from Camellix; Low FODMAP Oatmeal and Protein Bars from Nicer Foods; Oracoat Xylimelts; Scandinavian Formulas Saliva Sure; and Welmedix Homecare Pro full size product samples for fragile skin care.   

 Please mark your calendars for Saturday, January 28, 2017 for our Seventh Amy K. Parrish Patient Education Conference.  We are in the planning stages now; more information will come your way this fall.

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 Our next SC Chapter Event is the Second Stepping Out to Cure Scleroderma Fundraiser – Thomas Mills 5K & Walk to be held at Saluda Shoals Park in Columbia, SC on Saturday, June 11, 2016.  The 5K Race will be professionally timed and there will be awards to third place in each division, plus a special award for the Male and Female with the best time.    An untimed 5K Walk, a One Mile Family Fun Walk, and Stepping Out in Spirit (just enjoy the day with us) are also on the agenda and drawings for door prizes will be held in all of these categories.   We are planning a tasty light brunch, lots of activities and games for families and kids and a wonderful DJ playing music!   

 Registration may be done either online at www.scleroderma.org/steppingoutthomasmills or by mail, using the registration form from the flyer included with this mailing.   Mail entries to SC Chapter – Scleroderma Foundation; 713D East Greenville Street Box 194; Anderson, SC 29621.  Your online or mailed registration must be received BY MAY 31, 2016 to guarantee your t-shirt in the correct size.    $35.00 entry fee for all 5K Race Participants regardless of age.  All other categories:  $25 .00 for adults (age 14+) and $15.00 for children (ages 4-13 years).   Children 3 and under are free unless you want them to have a t-shirt, in which case they must be registered and the cost is $5.00.

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The Scleroderma Foundation National Conference will be held July 29-31, 2016 in New Orleans, LA.    For more information, please go to www.scleroderma.org and click on the Conference button.    This is a wonderful opportunity to learn more about scleroderma and to meet others “just like you”. Earlybird Registration ($200 vs. $250) ends May 31st!   We hope to see many of you there!

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Susan Melvin, President   ~   Karen Kemper, Vice President

Francis Parrish, Secretary & Webmaster  ~  Jeannie Freeman, Treasurer

Laura Baur, Julie Runyan-Brown and Lynn Whaley Simmons – Members-at-Large

Doris Frazier – Piedmont Support Group Representative 

Look  for us on Facebook!   “Scleroderma Foundation – South Carolina Chapter” 

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SC Chapter – Scleroderma Foundation ~ 713D East Greenville Street Box 194 ~ Anderson, SC 29621 

scchapter@gmail.com     864-617-0237

 

NEWS FROM THE PIEDMONT AREA SUPPORT GROUP

Please see below for a note from Jerry and Kay Misik, Support Group Leaders for the Piedmont Area Support Group, which meets at the Piedmont Medical Center in Rock Hill, SC.

Happy Easter!

Our March 15th meeting was a smashing success.  Dana Scott and Marsha Petrin, both Occupational Therapists, presented many new ideas to strengthen and help increase hand flexibility.  Thank you Jen A. for arranging for Dana and Marsha to join us for the evening.  It was a pleasant and worthwhile experience.

Next up...  Mark your calendars...  Tuesday, June 14th.  We will have the luxury of meeting with two young rheumatologists who have a specific interest in scleroderma.  And, to top it off, one of them has had experience working directly with Dr. Silver.  Here is a quick look at both of the two speakers scheduled for June 14th:

Dr. Ashley L. Toci earned her Doctor of Medicine Degree (summa cum laude) at West Virginia University.  She said the following when asked for reasons she has a special interest in scleroderma:  "I initially became interested in rheumatology because my grandfather had rheumatoid arthritis and my brother was diagnosed with juvenile arthritis at age 2.  When I was interviewing for residency programs, I was very impressed with the rheumatology department at MUSC and knew I wanted to train under Dr. Silver.  I worked very closely with Dr. Silver for 2 years and learned a great deal about scleroderma.  Scleroderma is a fascinating disease that affects patients in very different ways....no two scleroderma patients are the same.  Although I saw and treated scleroderma patients every day at MUSC, it is still a rare condition in the field of rheumatology.  I quickly became aware that many rheumatologists out in the community were not familiar with this disease and knew that I wanted to provide care for scleroderma patients the best I could outside of an academic institution."

Dr. Heather S. Gladue earned her Doctor of Osteopathic Medicine Degree at Nova Southeastern University College of Osteopathic Medicine located in Ft. Lauderdale, FL.  Here's what she had to say when asked for reasons she has a special interest in scleroderma:  "I developed a passion for Scleroderma in fellowship at the University of Michigan.  I was lucky enough to work with one of the leading researchers in Scleroderma and was able to do research in scleroderma - particularly focusing on pulmonary hypertension.  After fellowship, I went to Emory and had a scleroderma clinic for two years.  I participated in a GWAS study with NIH while I was there.  Now that I am in North Carolina, I still have a passion for taking care of scleroderma patients."

SAVE THE DATE!  You won't want to miss our meeting on Tuesday, June 14th starting at 6 PM at the Piedmont Medical Center in Rock Hill, SC.  

Should you have any questions that we should present to Doctors Toci and Gladue before the June 14th meeting, please pass them along to us.  We will be happy to relay them to our speakers so that they may do a little research before the meeting. 

We hope you all have a very blessed Easter!

Sincerely,

 Kay & Jerry Misik

 mjmisik32@comporium.net

 

      SPRING 2015 NEWSLETTER

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Hello to everyone from the South Carolina Chapter!   

 Mark your calendars and plan on attending the First Stepping Out to Cure Scleroderma Fundraiser – Thomas Mills Memorial Walk will take place on Saturday, June 13, 2015 from 9:00 AM until 11:30 AM at the Stage Area, 312 Laurel Street, Columbia, SC.    We have tried for years to have something in Columbia and finally we have achieved that goal. Many thanks to the family and friends of Thomas James Mills for making this possible.  See brochure included with this mailing for more information.  We hope to see many of you there – especially our Columbia area Scleroderma Patients and their families.  

 The Scleroderma Foundation National Meeting will take place July 18 and 19 in Nashville, TN.  This is driving distance for most South Carolina Chapter members.  Consider going to the Conference – you will not be disappointed!  See www.scleroderma.org and click on the button for Conference for more information.

 Also mark your calendars for our Tenth Stepping Out to Cure Scleroderma Fundraiser in Greenville, SC.  The date is Saturday, September 19th.  Events will include a 5K Run/Walk, a One Mile Family Fun Walk, Breakfast, Brown Bag Auction, Fun and Games, Music by SC Wedding DJ, and a presentation on Scleroderma.

 We had a wonderful Patient Education Conference on Saturday, January 31, 2015 at MUSC in Charleston featuring Cindy Coney as our Keynote Speaker.   Cindy was motivating and upbeat but also extremely credible and empathetic to the struggles of scleroderma patients.  I think everyone enjoyed hearing her strategies for coping with chronic illness.    Our Sixth Amy K. Parrish Patient Education Conference is scheduled for Saturday, January 30, 2016.  We hope to see you in Charleston!

 The Piedmont Area Support Group which meets in Rock Hill, South Carolina continues to thrive under the leadership of Jerry and Kay Misik.   Bi-monthly meetings take place at the Piedmont Medical Center in Rock Hill and feature excellent speakers and tasty refreshments.   If you live in the Rock Hill, SC area, please contact Jerry and Kay at 803-802-9332 or send them an e-mail at mjmisik32@comporium.net and they will let you know the date of the next meeting.

 We have had two ladies contact us with interest in leading the Greenville Area Support Group.  We have had some logistical problems getting together with them but we hope to have news of an active Greenville Support Group when we send out our next newsletter.

 We are still looking for help with leadership of our Charleston/Low Country Support Group.  If you have interest in volunteering for this, please let us know.   You may call 864-617-0237 or e-mail the Chapter at scchapter@gmail.com.

 

Susan Melvin, President         ~   Karen Kemper, Vice President

Julie Runyan-Brown, Secretary  ~  Jeannie Freeman, Treasurer

Laura Baur and Lynn Whaley Simmons – Members-at-Large

Doris Frazier – Piedmont Support Group Representative 

 

Look  for us on Facebook!   “Scleroderma Foundation – South Carolina Chapter” 

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SC Chapter – Scleroderma Foundation ~ 713D East Greenville Street Box 194 ~ Anderson, SC 29621  

FALL 2014 NEWSLETTER

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Hello to Everyone from the South Carolina Chapter of the Scleroderma Foundation!

          We are excited to report that our recent Stepping Out to Cure Scleroderma Event – Amy’s Walk and Betty’s Run was a huge success!!!!   After expenses, we raised over $15,000!  This is huge and it should be noted that our overall goal was to raise $10,000 before expenses.    Thank you to everyone who participated in any way at all because this wonderful success would not have been possible without each one of you.

          This was our first time incorporating a 5K Race into our Stepping Out Event and we didn’t know how it might work out.   It quite obviously was successful and we are pleased to say that the 5K will be back for 2015.   

It was also our first time to have our event in September rather than June.    Despite the unseasonably cool weather, it was a wonderful day.    We are going to try September again next year – a Saturday this time!   Please mark your calendars for Saturday, September 19, 2015.    More information will be forthcoming as the date gets closer.

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                Our next Chapter event is the Fifth Annual Amy K. Parrish Patient Education Conference on Saturday, January 31, 2015 at MUSC in Charleston.    We hope that you will make plans to attend.   Registration deadlines are January 16, 2015 (postmark date) or online registration by January 22, 2015.   Our host hotel is once again the Marriott Courtyard, 35 Lockwood Drive, Charleston.   Special rate for our group is $108 + tax per night.   Please refer to Group Code SCH when making your reservations.   Phone number is 888-724-9647 between 8 AM and 11 PM.   Hotel reservation deadline is January 16, 2015.

          We have an amazing keynote speaker in Cindy Coney, Lupus THRIVER, Ambassador of Hope and author of  The Wild Woman’s Guide to Living with  Chronic Illness.   Our 2014 Conference Participant Survey indicated a desire for an upbeat keynote speaker and we know that Cindy will be that and more!   

          Other speakers will include:  Dr. Carol Feghali-Bostwick (2014 Keynote Speaker) who will give us an update on her important Scleroderma research; Drs. Faye Hant and Michelle Ravenel who will speak on Dental Issues in Scleroderma Patients; Dr. Edwin Smith who will speak on Raynaud’s Phenomenon and Digital Ulcers; and of course Dr. Richard Silver who will give an update on Scleroderma and MUSC.

          This will be a wonderful day of education and good company and good food (vegetarian/gluten free choice will be available).  We hope you will join us!     To

 

Look  for us on Facebook!   “Scleroderma Foundation – South Carolina Chapter”

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SC Chapter – Scleroderma Foundation ~ 713D East Greenville Street Box 194 ~ Anderson, SC 29621 

 

register, fill out the registration form on the brochure which accompanies this newsletter and mail to the SC Chapter. You may also register online at www.scleroderma.org/amykparrishday .   If you have any questions, you may e-mail the Chapter at scchapter@gmail.com or telephone 864-617-0237.   

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          Currently, the only active SC Chapter Support Group  is the Piedmont Support Group led by Kay and Jerry Misik in Rock Hill, South Carolina.  This active group meets every other month at the Piedmont Medical Center in Rock Hill.  For information on upcoming meetings, please contact Kay and Jerry at  (803) 802-9332 or e-mail them at  mjmisik32@comporium.net .

          The Charleston (Low Country) Support Group has been without a leader since early 2014.    We have had many inquiries about the Group, but no one has stepped up to take the leadership role.    If any of you are interested in leading this Group, please contact the Chapter at scchapter@gmail.com or telephone us at 864-617-0237, or speak to a Chapter Board Member at the 2015 Education Conference.      MUSC is often able to provide meeting space and the SC Chapter will reimburse reasonable meeting expenses for refreshments and speakers.

          The Greenville Support Group is also in need of leadership.  This Group has been inactive for nearly two years now.   Meeting space is available at St. Francis Hospital close to Haywood Mall in Greenville.    If anyone is willing to lead this group, please e-mail the Chapter at scchapter@gmail.com or telephone us at 864-617-0237.    

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          The South Carolina Chapter is pleased to welcome two new Board Members:    Doris Frazier of Kershaw, SC, who will be the Piedmont Support Group Representative to the Board, and Lynn Whaley Simmons of Simpsonville, SC, who will be a Member-at-Large.      Doris has been a member of the SC Chapter for many years and shares a hometown of Danvers, MA with Susan Melvin, Chapter President.     Doris is married to Glenn Frazier and they have two adult children, seven grandchildren and two great-grandchildren.    Lynn Whaley Simmons is the daughter of  Betty Whaley, whose memory was honored with our first 5K “Betty’s Run” at the recent Stepping Out to Cure Scleroderma Event.   Lynn is an avid runner who competes in races all over the Upstate and throughout South Carolina.   Lynn is married to Tim Simmons and they have a beautiful mini Dachshund “Coco Chanel”.   

 

          Chapter Secretary Susan Worthen has retired and is enjoying lots of travel with her husband, John.  Best wishes to Susan!   Board Member Julie Runyan-Brown has taken over the position of Chapter Secretary.

 

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          The South Carolina Chapter wishes everyone a happy and healthy Holiday Season.   We hope to see many of you in Charleston on January 31st!

Susan Melvin, President          ~   Karen Kemper, Vice President

Julie Runyan-Brown, Secretary  ~  Jeannie Freeman, Treasurer

Laura Baur and Lynn Whaley Simmons – Members-at-Large

Doris Frazier – Piedmont Support Group Representative

 

Look  for us on Facebook!   “Scleroderma Foundation – South Carolina Chapter”

_____________________________________________________________________________________________

SC Chapter – Scleroderma Foundation ~ 713D East Greenville Street Box 194 ~ Anderson, SC 29621  

Summer 2014 Newsletter

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Upcoming Events

2014 Scleroderma Foundation National Meeting

Anaheim, California

July 25-27, 2014

                Doris Frazier of the Piedmont Area Support Group will be attending the National Meeting this year!   Doris is excited about this opportunity and is looking forward to learning the latest news about Scleroderma, meeting the National Office folks, and making new Scleroderma friends.   When Doris returns, we will ask her to share her experience with us!  Watch for the Fall 2014 Newsletter for Doris’ report.

 South Carolina Chapter Ninth Stepping Out to Cure Scleroderma Event

Greenville, South Carolina

September 14, 2014

                We hope you will join us at our Ninth Stepping Out to Cure Scleroderma Event to be held on Sunday, September 14, 2014 at Furman University Amphitheatre, Greenville, SC.   Information Page, Directions and Registration Form are included with this mailing.

                NEW THIS YEAR is a 5K Race, “Betty’s Run”, named in honor of the memory of Betty Whaley of Taylors, South Carolina.  We will also have our usual fun walk around the lake (Amy’s Walk).   Brunch will be served for all.   Dr. Richard Silver will be present again this year; he will be running the 5K and he will give a talk on Scleroderma News, followed by a Q&A.

                Many of you have asked why we are doing this Event on a Sunday.   The reason is that this was the only day this fall that Furman University could accommodate a 5K Race.  We originally had our event scheduled for the second Saturday in June, our traditional date.   When we started to plan the June event, all but one member of the Planning Committee told me that they would be unable to help this year due to other commitments.   This event is just too big for one person to do all the work.  After discussion, the SC Chapter Board made the sad decision to cancel the event altogether, hoping that we could come up with alternative fundraisers for 2014.    Just after we made this decision, Betty Whaley’s family asked us about putting on a 5K in her memory.    A planning committee was formed and the SC Chapter Board realized that we could have our Stepping Out Event after all.  We contacted Furman for a date that could accommodate a 5K (which involves a great deal of the campus, not just the Lake loop).   Sunday, September 14th was the only date available.   In 2015, we will be able to have a Saturday since we will be able to reserve a date with much more notice to Furman University.

                We hope to see you at our 2014 Event!   Go to www.scleroderma.org/steppingoutsc or fill out the registration form included in this mailing.   Your registration must be received either by regular mail or online by AUGUST 27, 2014 to guarantee your t-shirt size.

 

2015 Amy K. Parrish Patient Education Conference

Charleston, South Carolina

January 31, 2015

                Mark your calendars for the FIFTH Amy K. Parrish Patient Education Conference.  We will have a full day of education, socializing and good food!    Information and Registration Forms will be mailed to you in December, with online registration available by December 15, 2014.   Speakers and meeting agenda will be announced in the Fall Newsletter.

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                Best wishes to everyone for a healthy, not too-hot summer!   If you have any comments or questions, please e-mail the Chapter at scchapter@gmail.com.

                                                                                                                                                                       

 

South Carolina Chapter Scleroderma Foundation ~ 713-D East Greenville Street, Box 194, Anderson, SC 29621 ~ scchapter@gmail.com