Community Network Action and Accomplishments  

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July 2004 The launch of the redesign of eLymphNotes, that includes a Q&A online Forum, 

February 27 and 28, 2003
The LAF’s  first successful attempt with an evening educational seminar, exclusively for Physicians, RNs and healthcare professionals. 

2002 & 2003
The Mayor of Tavares attends the Work Out for Lymphedema Fundraising Events   

 2003

The Mayor of Tavares attends the Work Out for Lymphedema Fundraising Events in 2002 & 2003  
It so happened that the Mayor offices’ secretary has primary lymphedema and was not seeking help! With her assistance, Mayor Bob Speaks came and presented the proclamation at the 2002 event.  Pam Smith, Event coordinator and Community Network leader secures the Mayors attendance for the Work Out event in 2003.



eLymphNotes Introduces New Editor, Mary Defoe  
Mary Defoe, formerly assistant editor of eLymphNotes, has been invited to move up to the position of Editor. Mary holds a BA in English. Her publication experience includes: assistant editor of The Heart of Kentucky Journal, a bi-monthly publication; editor at AT&T's electronic publishing department; and documentation specialist. Mary will be responsible for the content of eLymphNotes and building an editorial staff to assist in obtaining up-to-date educational articles, news, and trends in the lymphatic field. We welcome Mary's vision in expanding the reach of eLymphNotes.

Mary’s 1997 breast cancer treatments led to lymphedema a year later. She felt called to co-found a lymphedema support group, The Lymph Connection, at St. Elizabeth Medical Center, Edgewood, KY. As a Reach to Recovery Volunteer for The American Cancer Society, Mary visits with newly diagnosed breast cancer survivors, especially those with concerns about lymphedema.

eLymphNotes, The First Online Magazine on Lymphedema, is a complimentary publication published by the Lymphedema Awareness Foundation, a not-for-profit organization. Donations, advertisers and sponsors support eLymphNotes.

Email Mary at editor@elymphnotes.org  

Yes, our summer heat and humidity often do make Lymphedema worse. We spend more time indoors to keep the swollen limbs cool than most of us would like. Just one further downside to this complication. Thanks to Florida Representative Mike Hogan and to former Florida State Senator Jim Horne the Florida Legislature declared each March 6th to be Lymphedema D-Day, adding the Sunshine State to National Lymphedema Network's national quest for this authorization throughout the country.

LAF vice-president Candace Bridgewater and Orange Park Support Group stalwart Joyce Hinely accepted the formal proclamations from Rep. Mike Hogan. Lymphedema D-Day gives groups the chance to plan events, mailings, publicity, and parades in the quest to make enough noise to be heard - we need to educate physicians, insurance companies, and potential patients.    

LAF representatives have been invited to speak on Lymphedema at 'Grand Rounds' at the University of Florida in Gainesville.  
Also at ''A Family Journey Through Breast Cancer'' at Jacksonville's Memorial Hospital, at a Bosom Buddies Support Group at Jacksonville Beach, the Ribbons and Roses Breast Cancer Support group and the Breast Cancer Awareness Day at Naval Air Station Jacksonville, and at the St. John's County Cancer Program Committee at Flagler Hospital in St. Augustine. where a farsighted (LAF educated!) oncologist is pushing for the hospital to train a Lymphedema therapist (hooray!!).

How were these invitations garnered? By asking our physicians - again and again and again, by meeting the right people, by asking them again and again and again, by attending every possible event that could have Lymphedema patients in attendance, and by asking again and again and again to speak. Not exactly an 'invitation' according to etiquette books perhaps, but it is the way to get the word out on Lymphedema.    


October 2000
Candace Bridgewater of the Orange Park Community network gets LT. Governor of Florida & a TV camera crew to attend NLN conference in Orlando Florida. The LT. Governor of Florida attended the opening ceremony, which he gave a heart-felt presentation. The LAF welcomes prominent politicians to address lymphedema. From Candacees press releases attactec a  TV Camera Crew to come, a first for an NLN conference. The Dr. Todd Husky show of WESH channel 2, an NBC affiliate ran a medical story on lymphedema during October 2000, as a result.  

December 4, 2002 – Bring lymphedema to the Lake County Legislative Delegation Meeting
The Lake County Legislative Delegation held a meeting at Lake-Sumter Community College on December 4, 2002. Meetings like these are held for the public to express their concerns directly to the legislators who represent them. The Lake County Daytime Lymphedema Support Group, coordinated by Pat Thompson, was placed on the agenda in order to voice its opinion about the need of establishing a Medicare protocol for private insurance companies to follow in covering lymphedema care. Josephine Carey, President of the Lymphedema Awareness Foundation, presented the case for the group.

The Call-to-Action requested:

• A clear definition of the amount of lymphedema treatments Medicare will cover with leeway for additional treatments based on the direction of the licensed referring or treating physician.
• Medicare approval to cover the cost of the durable medical equipment and supplies necessary for a patient with lymphedema to manage their care at home.

Representative Carey Baker of Eustis invited the support group members to this meeting. Although Medicare is a Federal program, the support group members wanted State Representatives to be aware of the concerns of lymphedema patients.  


July 2000 - eLymphNotes, The First Online Magazine on Lymphedema  
3^rd Annual Awareness Event was marked the launch of the eLymphNotes. Jeff Dorton, Candace Bridgewater and Josephine Carey worked feverishly to produce a complimentary publication, to provide education and information where people live.  

January 24, 1998 – Marked the first local lymphedema event in the USA  
The event was presented in Orlando, Florida and coordinated by patient Josephine Carey and Lymphatic Therapist, Ginger Cox. Starting with a budget of $0 and the determination to spread awareness, this event ended with attracting Dr. Kasselroller, then Medical Director of the Dr. Vodder School in Austria and the sponsorship of the American Society of Lymphology.

To join Team Lymph - 0 - Maniacs - its $35 per person and you get a team visor, t-shirt, water bottle and refreshments and team tent rental. Also included are 4 practices, two weeks before race day and a minimum of 3 races on race day. Lymphedema educational materials will be circulated.. This is a public event and a great opportunity to make the general public aware of Lymphedema – come and cheer on the team!
 
Each team member can invite their friends and family to sponsor them and cover their initial $35 cost.  

Bring in the Gold!
Sponsor levels – Gold $1,000, Silver $500, and Bronze $200. Recognition and acknowledgments will be given on race day at the team tent. 

To Support the Team:
By sending a donation online or mail to the 'LAF' and mail to: 172 Lakeside Circle, Sanford, FL 32773, USA or Volunteer on race day.
 
For more information on Dragon Boat racing go to: www.floridadragonboats.com/DB_Overview.htm  


January 8, 2004
A free program entitled ''An Evening of Lymphedema Education'' was presented January 8, 2004 by the Women’s Center of Jacksonville’s Bosom Buddies, The Lymphedema Awareness Foundation and the Jacksonville Lymphedema Clinic. Renee Romero, RN of Bandages Plus was the featured speaker and Frank Lambrechts of Juzo spoke and presented information on lymphedema garments. Thanks to Bobbi de Cordova-Hanks of Bosom Buddies and Steve Parkinson of the Jacksonville Lymphedema Clinic for developing this program.


The Orange Park Florida branch of the Lymphedema Awareness Foundation hosted double lymphedema seminars February 27 and 28, 2003.

Presenters: Renee Romero and John McDonald, MD.

The Thursday evening meeting for medical professionals, held at and sponsored by the Orange Park Medical Center, was standing room only for more than one hundred physicians, nurses, physical therapists, occupational therapists, licensed massage therapists, and lymphedema therapists. Each received two free continuing medical or education credits as they learned about the connection between wound care and lymphedema from John M. Macdonald, MD and Renee Romero, RN, CLT-LANA.

Presenters: Renee Romero and John McDonald, MD.
The participants were supplied with literature about lymphedema from the LAF and NLN as well as a list of local certified lymphedema therapists and support group information. Every effort was made to educate these essential health care members about lymphedema, its reality and its treatment.

Candace Bridgewater presents a plague to Josephine Carey

The Friday meeting, for one hundred patients, those at-risk, and caregivers was held at the Orange Park Holiday Inn and was sponsored by the North Florida Affiliate of the Susan G. Komen Breast Cancer Foundation, the RITA Foundation, Inc. (a local organization focusing on breast cancer issues), the American Cancer Society, and eLymphNotes. The underwriting gold sponsor was Lohmann & Rauscher, Inc., and the silver sponsor was The Jacksonville Lymphedema Clinic.  Dr. Macdonald and Mrs. Romero even more thoroughly described the causes, progression, and treatment of lymphedema for those who attended Friday¹s session. Lymphedema products were displayed by a wide variety of vendors and treatment centers. A continental breakfast and buffet lunch was served, all at no cost, thanks to the sponsors. The goal of these seminars was to educate medical professionals and patients about lymphedema, and we feel this was successfully achieved.



First Coast News TV station airs story on Lymphedema at an LE Clinic for the upcoming LAF Seminar, Jacksonville Florida.  
Journalist Jeannie Blaylock, Candace Bridgewater, Preston Parkinson, Ann Jett and a crew of Lymphedema Therapists spoke with the media about Lymphedema.   
 












2003 Annual LE Fund Drive - kick off event - Oct. 25 in Tavares FL
Join in on the fun, give what you can & enjoy... Lymphedema exercises
• Manual Lymph Drainage (MLD) sessions
• Product demonstrations
• Networking for Therapists & Patients
• Lymphedema T-shirts, Hand Outs & Giveaways
• Music, Raffles, & More!

FREE Admission & Refreshments! 
Work Out for Lymphedema Fundraising Event for the Lymphedema Awareness Foundation (LAF). 
DATE: Saturday, Oct. 25, 2003
TIME: 10am to 2pm
PLACE: YMCA / Waterman Florida Hospital
ADDRESS: 32029 David Walker Drive, Tavares, FL 32778
Therapists who donate MLD sessions will get a complimentary ad in eLymphNotes - a $60 value. Patients wear a compression garment if you have one. RSVP by Oct. 20, 2003 or for details or to help volunteer, contact: Pam Smith, OTR/L MLDT, Program Coordinator Tel: 352-742-8282
 
  
2002 - Celebrating two years of eLymphNotes
LAF Hosted Pre-Conference Wine Party at the 5th National Lymphedema Network International Conference

LAF members Candace Bridgewater (eLymphNotes editor), Fran Davila-Aponte (daytime support group co-chair) and Mary Defoe (eLymphNotes assistant editor) welcomed twenty guests. Among them were Dr. Judith Casley-Smith of the Lymphoedema Association of Australia; personnel from Bandages Plus online lymphedema supplies ; members of Wendy Chaite's Lymphatic Research Foundation (LRF) ; Jeanne Tassis founder of the Lymphedema Circle of Hope Foundation and designer of the official lymphedema butterfly pin.
 
Judith Casley-Smith with eLN editor, Mary Defoe Candace Bridgewater with Monica Keller Mary Defoe, Editor of eLymphNotes, listens to what people want from eLymphNotes. Myr Odeda and Fran Davila-Aponte with guests  

Judith Casley-Smith with eLN editor, Mary Defoe		Myr Odeda and Fran Davila-Aponte with guests
Mary Defoe, Editor of eLymphNotes, listens to what  people want from eLymphNotes.		Candace Bridgewater with Monica Keller

 

2001 Work Out for Lymphedema Fundraiser in Greater Orlando, Florida 
The LAF's 4th Annual Lymphedema Awareness Event took on a different twist from usual presenter/exhibitor events in the past. This time with an informal focus on exercise, fun and MLD! Lymphatic Therapist Susan Stockhoff-Allen gave Lymphedema exercises, Joanne Ross, Ginger Cox and Scottie Bull generously donated CDP and MLD sessions. And there was more! Lissa Pare, a Taerobx Instructor, later gave a toning & stretching class plus all enjoyed Lymphedema T-shirts, refreshments and networking. 

Thanks for your donations! 

  
July 2000 - eLymphNotes, The First Online Magazine on Lymphedema 
3rd Annual Awareness Event was marked the launch of the eLymphNotes. Jeff Dorton, Candace Bridgewater and Josephine Carey worked feverishly to produce a complimentary publication, to provide education and information where people live