Lighthouse Lymphedema Network

 

Cole Sanders

On Tuesday May 22, 2012 the Lighthouse Lymphedema Network lost one of our own.  Cole Sanders was a long standing LLN Board Member who dedicated himself to the care of his wife Libbie and to our organization.  His will be a void left unfilled.  He will forever be missed by all of us who knew and worked with him over his many years of dedicated service.  His life was forever changed when he lost his beloved Libbie just a few short years ago.   Our gratitude and our sorrow are extended to the Sanders family during this difficult time.  Please know that you, Cole, and Libbie will forever be in our thoughts and prayers.

The family received friends on Friday May 25, 2012 at 5:00 p.m. at the Wages & Sons Funeral Home in Stone Mountain, Georgia.  A Memorial Service was held directly afterwards at 7:00 p.m. in the Chapel.  The family has asked that in lieu of flowers, donations can be made to the LLN.  We humbly accept this generous support.  If you care to donate, please click here.

    

The LLN Store is now open.  Our first two items are ready for sale and you won't want to miss them! 

 

  

Heather Ferguson, mother of a son born with lymphedema, tells her story

 

  

A video message from our Director, Joan White

 

Please Donate!

This time of year we pause to thank our many contributors for their generosity last year and in years past.  These are difficult times for all of us.  We understand in these difficult times we all must regroup and reassess how we spend our valuable resources.  We offer you this. We give all we can to those in need and to support our organization.  We have no paid staff.  We are all volunteers.  We manage your money as carefully as if it were our own.  We need donations to continue to provide education, services, and garments to those in need.  Without you, we cannot do our mission.  Please consider adding us to your list of charitable organizations worthy of your donation.  We have made giving easier this year.  You can now donate safely and securely right here on our website with your credit or debit card.  Click here to donate.  We cannot thank you enough for your donation.  If you have any questions for us, please fill out the Contact Us form on this site.  For more information on what we do and how we do it please visit this page.

 

  

Exciting News! 

A national lymphedema bill has been introduced by Congressman Larry Kissell of North Carolina in the House of Representatives as H.R. 2499, the “Lymphedema Diagnosis and Treatment Cost Saving Act of 2011”.  The bill has the goal of providing insurance coverage for lymphedema patients and compression supplies in order to reduce total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this medical condition.  To view the bill go here. For in depth information click on the logo to the left. 

 

Current Events of 2012

 

Joan White, LLN Director (left) and Dr. Janice Cormier (right).  Dr. Cormier spoke at LLN Mini-Conference to the LLN audience February 29, 2012. Click here for a synopsis of her lecture.

  

Highlights of 2011

The 14^th STATE OF GEORGIA LYMPHEDEMA EDUCATION & AWARENESS PROGRAM was held Saturday, October 15, 2011, at the Hilton Garden Inn, Atlanta Perimeter Center.  This is our annual education and awareness conference for patients, caregivers, family members, and medical professionals.  As always, we are especially thankful to our speakers and presenters for making our program a success.  

 

 

 

 

Our primary speakers are pictured here left to right:  David Finegold, MD , LeAnne Fox, MD, and Young-sup Yoon, MD, PhD

 

 

 

 

 

 

• David Finegold, MD (Dept. of Pediatrics, Children’s Hospital of Pittsburgh, Dept. of Human Genetics, University of Pittsburgh).  This is the third time that Dr. Finegold has presented at a LLN forum.  His first talk was entitled “Lymphedema Genetics: Of Mice and Men”.  In this talk, Dr. Finegold discussed genetic research on connexin 47 in skin and brain, Hennekam Syndrome and Emberger Syndrome.  In his second talk entitled “Lymphatic Genetics in the Future: A Ride on the Starship Enterprise” he discussed work that has happened since 2007.  There are now a total of 8 genes identified with lymphatics:  FLT2, FOXC2, SOX 18, HGF, MET, CCBE1, GJC2, and GATH2.  Dr. Finegold may also have identified a genetic susceptibility to lymphedema in women following breast cancer.  This potentially exciting paper is now in press! Ten years after publication of the Human genome, we are on the brink of many discoveries.  Much research is needed and funding is tighter than ever.  Research lab costs have increased dramatically, but levels of funding from NIH have decreased consistently.  Note:  Dr. Finegold’s lab is in danger of closing in March because of insufficient funding!  Please visit the University of Pittsburgh Dept. of Human Genetics Lymphedema Family Study website to make a donation to further this critical research.  

 

• Young-sup Yoon, MD, PhD (Cardiology & Stem Cell Biology, Emory University Medical Center).  Dr. Yoon has been conducting a lot of stem cell-related research, especially on the lymphatic system.  He gave a brief review of the lymphatic system, or the “third vascular system: after arteries and veins.  Stem cells are needed to initiate angiogenesis (vessel formation).  Dr. Yoon became very intrigued with endothelial progenitor cells, or EPC’s (A progenitor cell is a biological cell that, like a stem cell, has a tendency to differentiate into a specific type of cell, but is already more specific than a stem cell.)  Unfortunately, there are no NIH-funded studies for lymphedema treatment this year.

 

• Leanne Fox, MD, MPH, DTM&H (Division of Parasitic Diseases and Malaria, Center for global Healtlh, Centers for Disease Control & Prevention).  Dr. Fox focused on infectious diseases as the causes of lymphatic filarisais (lymphedema caused by infection from filaria, microscopic parasites transmitted by mosquito bites) worldwide and global programs by DCD, WHO and in-country global programs to reduce its occurrence.  1.3 billion people are at risk world wide for lymphedema filariasis, with lymphedema often leading to elephantiasis.  81 countries worldwide are endemic for LF.  Only 27 presently have active lymphedema management programs.  Dr. Fox discussed various treatment models used in countries such as Africa and India.  The US government, NGOs, and the Bill and Melinda Gates Foundations are all very involved in supporting the LF treatment programs around the world.

A complete review of the 3 primary speaker presentations can be found here.

Other important events of the day included:

Tammy Malone (left) and Laura Hoffman (right) discussed the importance of compression.

 

 

 

 

 

 

 

 

Rebecca Hammad presents her story of having Primary Lymphedema.

 

 

 

 

 

 

 

 

   

Larry Ashmore discusses his acquiring secondary lymphedema.

 

 

 

 

 

 

  

Our breakout sessions:

• Truncal and Arm Lymphedema – Gwen Forbes-Kirby, PT, CLT-LANA, Stephanie Kirkpatrick, MPT, CLT-LANA, and DeCourcy Squire, PT, CLT-LANA
• Leg and other Lower Lymphedema – Shelley Smith DiCecco, PT, CSLT and Samantha Cannon, MSOT, CLT
• Parent Networking:  Vicky Day, Debbie Labarthe, and Janie Smith, PT, CLT

Thanks to the following businesses for their financial support of this conference:

 

• A Woman’s Place at Northside Hospital
• Bandages Plus
• Bauerfeind, USA, Inc.
• CircAid Medical Products, Inc.
• BSN-Medical/JOBST
• JUZO
• MEDI, USA
• Peninsula Medical Products
• Physiomed
• Pretty Please Healthcare
• Solaris, Inc.

 

Special thanks to:

• SOLARIS, INC. for the sponsorship of Young-sup Yoon, MD, PhD and the donation of $3,000.00 in product to our Bandages and Garment Fund.
• PRIMERICA  for the sponsorship of David Finegold, MD
• BANDAGES PLUS for the donation of the book entitled “100 Questions & Answers” for a door prize.
• PENINSULA MEDICAL PRODUCTS for the donation of product as a door prize.

Thank you to our conference committee:

• Deb Cozzone
• Linda Harman
• Gwen Forbes-Kirby, PT, CLT, LANA
• Janet Nash (Program Brochure)
• Stacy Saraydar, PTA, CLT, CSLT
• Janie Smith, PT, CLT
• Beverly Thompson
• Joan White

Thank you to the following individuals for their assistence during the conference:

• Conference Moderator:  Elaine Gunter 
• PowerPoint coordinator: Gary Gunter
• Photographers: Debbie and Clint Labarthe
• Video: Doug White
• Registration: 
  • Deb Cozzone
  • Linda Harman
  • Vera Newman
  • Janie Smith, PT, CLT
• CEUs:
  • Dolores Bradley, PhD
  • Gwen Forbes-Kirby, PT, CLT-LANA
• Cookbook and Book Sales:
  • Larry Ashmore
  • Vicky Day
  • Beverly Thompson

 2011 Volunteer of the Year

 

Joan White, Director (left) presents Deb Cozzone (right) with her award.

Deb is the administrator of the Bandages and Garment Fund.  She is on the legislative committee, our grant writer, and always works on the conference.  Deb is the “spirit of volunteerism.”  We congratulate her as our volunteer of the year!

 

The Lighthouse Lymphedema Network

 is an extremely active and involved 501(C) 3 nonprofit organization

•  The Bandages and Garment Fund has assisted over 140 patients since it began in 2001.  Deb Cozzone, administrator, reports that this year alone we have assisted 48 patients. 
• Fund Raising includes:  Yard sales, silent auctions, Piedmont Hospital Craft Bazaar, DeKalb Medical/Hillandale Spring Artist Mart and Health Fair, Denver Fencing Center sponsorship of the "Bill" Goering Memorial Fencing Tournament, Southern Loss Association sponsorship of the Larry Hart Golf Outing, Bellmere Gardens Luncheon, Tour and Plant Sale.
• Publication of quarterly newsletters.  Special thanks to Elaine Gunter, our editor, and Gary Gunter, her very valuable assistant.
• Website:  Clint Labarthe is the creative genius behind the website.  We applaud Clint for his dedication, determination and imagination.
• Publication of a cookbook entitled Favorite Recipes.
• Publication of a book entitled The Puzzle:  An Inside Glimpse of Lymphedema.  Special thanks to our book editor, Vera Newman and the endless hours of editing by Vera, Deb Cozzone, Katie Russo, and Debbie Labarthe.
• Lymphedema Education Day at the Georgia State Capitol.
• LLN supports efforts to pass the National Lymphedema Bill.
• Participation in Health Fairs and Lymphedema Walk or events:  Winship Cancer Institute Celebration of Living, Atlanta Technical College Health and Wellness Expo, Gloria Watts-Cox Foundation Walk for Lymphedema, Susan G. Komen Race for the Cure
• Sponsorship of an annual all day medical conference in October.
• Sponsorship of a mini-medical conference in February. 
• LLN lymphedema educational brochure entitled Do You Have Swelling That Does Not Go Away"? 
• International Project:  Collect new or clean and gently-used bandages and compression garments for treatment of persons with lymphedema in South Africa. If you have any bandages or garments that you would like to donate, please be sure they are clean, and notify us using our Contact Us form.