2007 Lymphedema D-Day Celebrations

Circle of Hope Lymphedema Foundation - CT

In celebration of Lymphedema awareness month in the State of CT, the Circle of Hope Lymphedema Foundation was delighted to host a reception honoring individuals who have been diagnosed with lymphedema. The festivities took place on March 28 at the Harold Leever Regional Cancer Center in Waterbury, CT featuring noted motivational speaker Bernie Siegel, MD, internationally known physician, author and advocate for individuals facing chronic illness. His message was clear: A positive and pro-active approach to your health along with a sense of humor will not only ease the journey ahead of you, but will enhance the pleasure of the journey while you travel along its path.

Dr. Siegel stressed that acting like a survivor makes you a survivor, he also emphasized that people need to understand that the power of positive thinking is real. An individual's thoughts, feelings, and moods have a proven positive effect on the body's chemistry. Dr. Siegel reminded us, too, that as patients in today's health care environment, we have the right to demand respect, ask questions, and empower ourselves. This proactive approach, together with the power of positive thinking, can change the way we heal and improve our quality of life.

Dr. Siegel had all in attendance laughing and clapping, thinking and reflecting. Two patients were honored for their compassion, determination and desire to help the lymphedema movement. Jean Miller and Jean Sciaudone were honored and given a plaque and Dr. Siegel's book.

submitted by Jeanne B. Tassis, President and Founder of the Circle of Hope Lymphedema Foundation Inc.

Lymphedema Fashion Show: A Big Success!

On March 3, 2007, the Lymphedema Support Project in Santa Cruz, California, a local network of patients and their supporters, presented "Spreading Our Wings"-A Lymphedema Fashion Show & Champagne Luncheon. The event, which sold out at more than 200 participants, was a first-time fundraiser for the newly established Lymphedema Patient Support Fund at the Dominican Hospital Foundation. In addition to the experience of a fun and inspiring event featuring models with lymphedema, speakers and entertainment, participants helped to raise nearly $15,000 for the fund. Patients and therapists were honored with National Lymphedema D-Day Awards presented by Saskia R.J. Thiadens, NLN Executive Director. The Keynote Presentation featured Sherry Lebed Davis, nationally known author and founder of the Lebed Method of therapeutic dance movement. Celebrity guest model Sista Monica Parker, nationally renowned blues/gospel singer and lymphedema patient, "rocked the house" as she joined local patients on the fashion runway. The event was attended by patients throughout the San Francisco and Monterey Bay area, as well as families and friends, doctors, and therapists. The Lymphedema Support Project partnered with the Dominican Hospital Foundation, the Katz Cancer Resource Center and the Dominican Lymphedema Clinic to present the event. As a result of the success of "Spreading Our Wings," referrals to the Dominican Hospital Lymphedema Clinic have nearly doubled, and participation in the local Lymphedema Patient Support Group has increased dramatically.

submitted by Michelle Shippen, Coordinator The Lymphedema Support Project

2007 Lymphedema D-Day Award Recipients

Each year we recognize courageous patients, therapists or physicians who have made a huge difference in the field. NLN is proud to acknowledge these special patients and caretakers and thank them for their advocacy and efforts to make Lymphedema manageable.

Honoree: Pauline Slivinski (Philadelphia, PA). 
Honored by: Wilma Morgan, OTR/L, Janice Buhler, MS, PT, OCS, Vikki Moran, AA (Rehab Department at the Fox Chase Cancer Center) 
Tidbits: Pauline is a very kind, thoughtful, and compassionate woman. She also is an expert chocolate candy maker and owner of Celtic Confections. Pauline and her daughter, Anna Marie, had taken a vendor's table in the lobby of Fox Chase Cancer Center to sell her confections and then donated the proceeds to our Lymphedema Support Group to be used solely for patients who have financial difficulty with purchasing their compression garments. As with most retirees, Pauline is on a fixed income, but she believes so strongly in the cause for education and information regarding lymphedema that she contributes more than her share. She is also an excellent "spokeswoman" for women's education regarding Lymphedema.

Honoree: Jeanne Miller (Waterbury, CT) 
Honored by: Jeanne B. Tassis, COHLF President (Circle of Hope Lymphedema Foundation Inc) 
Tidbits: Jean struggled with lymphedema and had many cellulitis infections before she found the Circle of Hope Lymphedema Foundation and we talked. She found hope and treatment. She has become a great advocate for lymphedema and is a caring and motivated person. She is working hard to help get HB 5303 passed this year in CT. This Bill will provide insurance for lymphedema treatment and supplies. She has taken control of her life and her lymphedema.

Honoree: Jean Sciaudone (Waterbury, CT) 
Honored by: Jeanne Tassis, COHLF President and Carolyn Lucey, OTR/L, CLT-LANA President (Circle of Hope Lymphedema Foundation Inc) 
Tidbits: Jean was honored because of her motivation, compassion and dedication to her treatment. She took over her care for her lymphedema at home and was very diligent. Due to her limited health insurance coverage for her LE treatment and supplies she had to pay high out of pocket expenses. In January 2007, Jean went above and beyond by giving public testimony at the CT. state capitol to propose legislation which would provide private health insurance coverage for lymphedema treatment and supplies.

Honoree: Elaine Gunter (Atlanta, GA) 
Honored by: The Lighthouse Lymphedema Network 
Tidbits: Elaine is a member of the LLN Board of Directors, Legislative Committee of Georgia, hosted the 2006 LLN garage sale, serves on our grant writing committee and is Editor of our newsletter. The Lighthouse Lymphedema Network is honored to nominate Elaine to receive the NLN 2007 Lymphedema "D" Day Award in recognition and honor of her courage, strength, and determination while living with lymphedema.

Honoree: Charles (Pat) O'Connor (Atlanta, GA) 
Honored by: The Lighthouse Lymphedema Network 
Tidbits: Pat, as he likes to be called, is the creator of the awarding winning website entitled "Lymphedema People". Pat was born with Milroy's Disease, an inherited form of lymphedema. For 52 years he has lived with lymphedema and in his own words, "My life is an example of what can happen when lymphedema is incorrectly treated, or not treated at all. But, it is also, I hope, an example of what you can do and what a full and exciting life you can have, even with lymphedema". The Lighthouse Lymphedema Network is honored to nominate Pat to receive the NLN 2007 Lymphedema "D" Day Award in recognition and honor of his courage, strength, and determination while living with lymphedema.

Honoree: Dana Daniels, PT (Wichita Falls, TX) 
Honored by: Karel Davis (patient) 
Tidbits: Dana began treating my lymphedema last year; at one point she even spent her own money to attend a seminar to learn more about lymphedema and learn better methods she could use to treat my condition. I think that qualifies as going above & beyond the call of duty. Dana is the type of person you want as a physical therapist, someone who truly cares about her patients & what would make their life easier & more manageable.

Honoree: David Kryston (Melbourne, FL) 
Honored by: Wuesthoff Health System Lymphedema Program Support Group 
Tidbits: David reluctantly started the lymphedema program in 2001. At the time we were asking for stories from patients for the "the book" we are writing. David was more than happy to give us his story. Since then we have shared his story with many patients who are battling lymphedema. I could see the nods of heads, and grins that lead me to believe there was a connection. His story has helped motivate patients who were having a difficult time. David has truly made a difference in many patients' lives.

Honoree: Karen Foy (Palm Bay, FL)
Honored by: Wuesthoff Health System Lymphedema Program Support Group 
Tidbits: Karen has had "stubborn swelling" and multiple bouts of cellulites. Karen has never given up and has taken charge of her lymphedema AND is winning the battle. Her perseverance is a reminder to us all. "Never give up because that is the place and the time that the tide will turn"

Honoree: Marina Branch, PT CLT-LANA (Covington, KY)
Honored by: The Lymph Connection 
Tidbits: The Lymph Connection honored Marina Branch, PT CLT-LANA, who works at St. Elizabeth Medical Center North in Covington, KY. Marina has provided expertise to the support group by being a guest speaker each year, has great empathy for those of us with lymphedema and most importantly, promptly returns calls and emails with her expert advice.

Honoree: Lori Reuss (Omaha, NE) 
Honored by: Wendy Buchholz OTR/L, CLT-LANA, Alegent Health Lymphedema Team 
Tidbits: Lori was nominated by Wendy Buchholz OTR/L, CLT-LANA for her positive attitude throughout multiple courses of treatment complicated by numerous co-morbidities. Although she continues ongoing treatment for chronic breast cancer and Lymphedema, she also provides support and mentoring for fellow patients. Always with an upbeat attitude! The Nebraska Governor Heineman read a proclamation designating March as Lymphedema Awareness Month and Lori received a framed copy of the proclamation.

Honoree: Nicole McKinnis (Omaha, NE) 
Honored by: Rachel Claserman, OTR/L, CLT-LANA, Alegent Health Lymphedema Team 
Tidbits: Nicole was nominated by Rachel Claserman, OTR/L, CLT-LANA for exceptional perseverance through a prolonged and difficult course of treatment for her lower extremity Lymphedema, which is possibly related to Protcus disease. Following successful treatment, she is now doing well with her home program. The Nebraska Governor Heineman read a proclamation designating March as Lymphedema Awareness Month and Nicole received a framed copy of the proclamation.

Honoree: Betty Oertel (Lake Mills, WI) 
Honored by: Johnson Creek Therapy and Edema Staff 
Tidbits: Betty Oertel is a charismatic, determined woman who has been fighting bilateral lower extremity lymphedema courageously for half of her life. She has fought with a positive attitude through the year long treatment process and has come a long way to improve her independence and self confidence. Betty is a queen among patients and an inspiration to all who meet her. We couldn't ask for a more wonderful patient to work with and just want to show our appreciation and gratitude for all her hard work by honoring her in this small way.

Honoree: Ruby Graff (Little Rock, Arkansas) 
Honored by: Laura Koch, GSSW with the Little Rock Lymphedema Support Group

Honoree: Vincent Lai (Oakland, CA)
Honored by: Saskia R.J. Thiadens, RN (National Lymphedema Network, Inc) 
Tidbits: Vincent has worked with the NLN for the past 3 years and many of you know him by phone or attending NLN Conferences. He has maintained a high level of professionalism and compassion during his time with the NLN. He has been a steady employee that the NLN Board, Committee's & fellow staff members can count on to know the answer to everything! Vincent is our data base manager & computer and technology guru, without him the staff would be lost. Thank you Vincent for being a great employee and supporter of the Lymphedema community!

Honoree: The NLN Medical Advisory Committee (MAC)
Honored by: Saskia R.J. Thiadens, RN (National Lymphedema Network, Inc)
Tidbits: Every member of the Medical Advisory Committee has consistently taken time out from their busy professional and personal lives to engage in the many MAC activities and provide valuable input. The 13 members of the MAC are leading professionals in the field of Lymphology in the US and have made a huge impact in medical issues (Position Papers and others) as well as strong advocates. These professionals are exceptional health care providers dedicated to improving the lives of lymphedema patients around the world. Thank you!