LLN January 2015 Newsletter Now you can find us on Facebook and on Twitter (LighthouseLymphedema@LLymphedema)! LLN: 21 years of serving the lymphedema community

www.lighthouselymphedema.org

Feb. 28th: LLN Lymphedema Education Program Specifically for RNs, LPNs, PAs, & NPs

Free registration & CNE credits will be available for attendance!

As part of our continuing educational efforts, the Lighthouse Lymphedema Network is sponsoring a Nurse’s Intensive Program on Saturday, February 28, 2014, 8:00 AM

to 1:00 PM, at The Roam facility, 1155 Mt. Vernon Hwy, Suite 800, Perimeter Pointe Shopping Centre, Atlanta GA, 30338. These lectures are designed to help nurses recognize

lymphedema and learn how to interact effectively with lymphedema therapists for improved patient treatment. See the next page for registration details! Directions: exit I-285 at Ashford-Dunwoody Rd, drive north to Perimeter Centre West (the street on the back

side of Perimeter Mall), and after about 3 stop lights, turn right into Perimeter Pointe Shopping Center. Look

left for the Sandy Springs MARTA station, and park in this area. The Roam is located in the top floor of the

Office Depot building. You will see the sign at the top of the building.)

[Get map & directions here: http://meetatroam.com/roam-dunwoodysandy-springs/#tGetT ]

SAME DAY/SAME LOCATION: LLN-sponsored first 2015 Open Forum for Lymphedema Patients & Therapists:

Following the Nurses Intensive program, we will hold an Open Forum for patients to meet

with lymphedema therapists from 1:30-3:00pm at the same location, the Roam. The Open Forums are a great opportunity to have one-on-one discussions with therapists and

ask lots of questions!

IMPORTANT NOTE TO ALL CERTIFIED LYMPHEDEMA THERAPISTS: Please check

our LLN website to ensure that your contact details are correct. Please send us

your e-mail addresses, too!

Thanks to LLN Members Vicki and Peyton Day for allowing us to use the Roam Facility for this

educational event!

2015 Lighthouse Lymphedema Network Calendar Dates to Remember:

• January 31, 2015 - LLN Board of Directors Meeting at the Country Club of Roswell.

• February 18, 2015 - LLN "Legislative Day at the Capitol,” 12:30pm until 5:00pm. • February 28, 2015 – Nurse’s Intensive Educational Presentation (The Roam Bldg, Atlanta, GA).

• February 28, 2015 - Open Forum Meeting for patients, family, & therapists (also at The Roam Bldg, Atlanta, GA) • Summer, 2015 – planned second Open Forum meeting • Saturday, October 24, 2015 – 2015 LLN Lymphedema Education & Awareness Conferece

Debbie Labarthe, Our 2014 LLN Volunteer of the Year, with LLN Director Joan White

The LLN Board of Directors is honored to recognize Debbie Labarthe as the 2014 Volunteer of the Year. Once a year, we honor someone whom we recognize as having contributed to the success of the LLN. This year, we are pleased to honor a very special person. In 2003, when Debbie’s grandson was born with swelling in his right leg and pelvis area, she dedicated herself to finding a diagnosis. Through her determination, her grandson was eventually diagnosed with primary lymphedema through the Vascular Anomalies Clinic at the Children's Hospital of Boston. She has served on the LLN Board of Directors since 2004 on various committees including our book committee, medical conference committee, and she is the primary representative for Parent Networking. She has served as the LLN secretary since 2006 and most recently as our FACEBOOK coordinator (In December, she logged LLN’s 1000th Facebook contact.).

LLN FUNDRAISERSLLN FUNDRAISERSLLN FUNDRAISERSLLN FUNDRAISERS Thanks to board member Shelley Smith DiCecco for writing both the Komen for the Cure and It's The Journey grants which were due mid-October and November 1. We hope to receive these grants again to continue LLN’s valuable programs such as the BAG Fund.

We made $500 for the BAG Fund selling our baskets at our Lymphedema Education & Awareness Conference. Thanks to Shelley Smith & Samantha Cannon for their efforts! LLN received $1000 this year on Georgia Gives Day, 11/12/2014, through a generous anonymous

donation. We also received $800 from the Gloria Watts-Cox Foundation, and $3500 in products from Solaris. Sigvaris will donate some leg garments and arm sleeves for our BAG Fund.

17TH STATE OF GEORGIA LYMPHEDEMA EDUCATION AND AWARENESS PROGRAM OCTOBER 25th, 2014

“Lymphedema Basics and Beyond”

SPEAKERS (L-R): Joan White (Founder/Director of LLN); Janet Wolfson (PT, CWS, CLT-LANA; Wound Coordinator, HealthSouth, Ocala,

FL); Mike Weiler, PhD, Salim Vagh, MCA, and Nate Frank, MBA (biomedical engineering doctoral candidates at Georgia Institute of

Technology); Linda Roherty (PT, CLT-LANA, Provena St. Joseph Hospital, Eglin, IL); DeCourcy Squire (PT, CLT-LANA, Lymphedema Mgt

Prog Coordinator, Hennepin County Med Ctr, Minneapolis, MN); Kathleen Francis, MD (Medical Director, Lymphedema Physician

Services, Livingston, NJ), Jane Armer (PhD, RN, FAAN, Professor, Sinclair School of Nursing, Univ MO; Director, American Lymphedema

Framework Project); Deb Cozzone (Administrator, LLN Bandages and Garment Fund); Elaine Gunter (program moderator). Also

speaking, at right: Paula Stewart, MD, Medical Director, Trustpoint Hospital, Murfreesboro, TN.

[Congratulations to our Georgia Tech Team above, and their director, Dr. Brandon Dixon, for winning a $50,000 grant from Rice University to continue development of their new lymphedema measurement technology – It was called the "most exciting innovation to improving breast cancer treatment" by the competition judges!] Speaker presentation topics: Paula Stewart, MD – “Basic Lymphatic System” Linda Roherty, PT, CLT-LANA: “Treatment Updates & C urrent Treatment Protocol” Kathleen Francis, MD – “Physician’s Role in Diagnosis & Treatment of Lymphedema” Mike Weiler, PhD – “Innovation Technology by LymphaTeam” Jane Armer, PhD, RN, FAAN – “Genetic Components for Predisposition to Lymphedema” Deb Cozzone – “13 Words of Inspiration” Janet Wolfson, PT, CWS, CLT-LANA – “Wound Care” DeCourcy Squire, PT, CLT-LANA – “Lipedema and Other Metabolic Disorders” If possible, we will try to obtain our speakers’ slide presentations and attach them to our website, www.lighthouselymphedema.org . We had 115 registrants, speakers, and vendors for our conference. Our meeting location was so great that we’ve locked it in for next year as well: The Doubletree by Hilton/Buckhead Atlanta is now booked for October 24, 2015 for the 18th State of Georgia Education & Awareness Conference. The Doubletree entrance street is right across from the Buckhead MARTA station, adding convenience for anyone coming from the airport, or other parts of the metro Atlanta area. Lenox Square Mall and many interesting restaurants are in the neighborhood as well.

Thank You to Our Sponsors for Their Financial Support of This Meeting and of LLN throughout the year!

A Woman’s Place at Northside Hospital; BiaCare; Body of Health; BSNmedical/JOBST Compression Products; Compression Ratios; Gloria Watts-Cox Foundation; ImpediMed; International Lymphedema & Wound Care Institute; JUZO USA; MEDI, USA/CircAid Medical Products, Inc.; Peninsula Medical Products; Sigvaris, Inc.; Solaris, Inc.; SunMED Medical; and WearEase, Inc.

Pictures of our wonderful supporting vendors

Registration for Conference Attendees CEU Registration for Therapists

Speakers for the American Lymphedema Framework Proj ect“Moving Forward Together in Improving Lymphedema Ca re”

Electra Paskett, PhD AFLP Director, Jane

Nicole Stout, MS, PT-LANA

AFLP’s mission is to improve the management of lymphedema and related disorders in the contributing to global international advancement.lymphedema management and developing a minimum data set to improve lymphedema outcomes. The ALFP will establish a leadership role in lymphedema risk reduction, treatment, education, health policy, and research. These outcomes will be achieved through a partnership among all lymphedema stakeholders, including patients, healthcare professionals, researchers, industry representative

LLN donates compression bandages and garments to the who have developed lymphedema; this year

Speakers for the American Lymphedema Framework Proj ect program, Friday, “Moving Forward Together in Improving Lymphedema Ca re”

AFLP Director, Jane Armer, PhD, RN FAAN Elaine Eigeman

Guilherme De Souza, PhD Linda Roherty, PT, CLT

AFLP’s mission is to improve the management of lymphedema and related disorders in the contributing to global international advancement. This mission will be achieved by defining best practices of lymphedema management and developing a minimum data set to improve lymphedema outcomes. The ALFP will

ole in lymphedema risk reduction, treatment, education, health policy, and research. These outcomes will be achieved through a partnership among all lymphedema stakeholders, including patients, healthcare professionals, researchers, industry representatives, and third-party payers.

LLN donates compression bandages and garments to the AFLP’s projects in Africa to help breast cancer patients

; this year’s project was in Ghana.

Friday, October 24 th “Moving Forward Together in Improving Lymphedema Ca re”

Elaine Eigeman

Linda Roherty, PT, CLT-LANA

AFLP’s mission is to improve the management of lymphedema and related disorders in the United States while This mission will be achieved by defining best practices of

lymphedema management and developing a minimum data set to improve lymphedema outcomes. The ALFP will ole in lymphedema risk reduction, treatment, education, health policy, and research. These

outcomes will be achieved through a partnership among all lymphedema stakeholders, including patients,

to help breast cancer patients

LLN BANDAGES & GARMENTS FUND UPDATE

Every year the Bandages and Garments Fund increases its reach to more lymphedema patients throughout Georgia, and 2014 was no exception! This would not be possible without the generous partnerships with garment manufacturers, garment providers and certified lymphedema therapists. We thank all of you for your support of the LLN and Bandages and Garments Fund. Some of our successes for 2014:

• In February we received a grant from It’s The Journey, Inc. for the second year in a row. This funding allowed us to purchase garment solutions for 19 breast cancer survivors.

• Two additional manufacturers joined our quarterly complimentary garment program. • We extended our reach by servicing patients in 6 new Georgian counties. • 73 lymphedema patients were provided a garment solution. • Over $33,000 from a variety of sources funded the support for these 73 patients:

o LLN Fundraisers and Fundraisers benefitting the LLN o Private Donations o Grant funding from Susan G. Komen for the Cure – Atlanta Affiliate (2013-2014 grant period) o Grant funding from It’s the Journey (2013-2014 and 2014-2015 grant period) o In-Kind Donations from manufacturing partners o Scholarship from manufacturing partner

The LLN and Bandages and Garments Committee would like to thank the following lymphedema fitters, manufacturers and organizations for their support during 2014. Without all of you offering the LLN discounted or complimentary goods and services and/or financial donations, we could never help as many people as we do! Thank you for your support!

A Woman’s Place at Northside Hospital Barney’s Pharmacy BiaCare Medical BSNmedical CH Martin - Fayetteville CH Martin - Stockbridge Compression Ratios Custom Compression

Consultants FarrowMed Gloria Watts-Cox Foundation It’s The Journey

JUZO USA Lohmann & Rauscher Mary Lou’s Garden Medi USA Piedmont Hospital Compression

Services Pretty Please Healthcare Sigvaris, Inc. Solaris, Inc. SunMED Medical Solutions Susan G. Komen for the Cure

Greater Atlanta Affiliate

If you have any questions or comments regarding the Bandages and Garments Fund, please contact Deb Cozzone at debcozzone@hotmail.com.

Other Lymphedema Support Organizations News:

Cindy Lichtenham of the Lymphedema Lifeline Foundation sent us a note about the April 2015 Western Slope [of the Rockies, to the East Coasters] Lymphedema Ed-Awareness Day at Community Hospital in Grand Junction, CO. For more details, see their website: www.Lymphedemalifeline.org DON’T FORGET TO SUPPORT THE NATIONAL LYMPHEDEMA TRE ATMENT ACT! For more information, see the LTA website: http://lymphedematreatmentact.org/ Get your Congressional Representatives and Senators to support the bill!

2014 Charitable Donations: Honoring: Casey Butler Cameron Carter Vicky Day Gwen Forbes-Kirby Lighthouse Lymphedema Network Trinity and Jonathan Maiden Jean Miller Piedmont Hospital Lymphedema

and Compression Program LE Patients at Piedmont Hospital Tristen Reid Carson Sollenberger Beverly Thompson Betty Upshaw Elizabeth Warner Joan White In Memory Of: Mary Bosbyshell Bob Forbes Bill Goering Larry Hart Harold Hoffman Stanley Niec Joyce Sikes Donations: Anonymous Donation Larry Ashmore Joyce Basso Sherilyn Bell William and Karis Bernardo Lisa Brewer Candace Bridgewater Janet Butler David and Bernice Cohen Marcella Blakney Collins Richard and Lisa Cruise Denver Fencing Center Barbara Dickson Ellen Donelson Lisa Donovan Simon and Candie Doy Marge Duncan Evelyn DuVal Virginia Fenlon David and Regina Finlayson Monica Goering Margaret Gravitt Elaine and Gary Gunter Linda Harman Imogene Hart William and Jane Hole

Anne Holloway Carol Johnson Leiba Kahan James Kirk Virginia Krueger Julia Krulie Bonnie Lasinski Clint and Debbie Labarthe Lynn Leuszler Tamara Malone John Martin Patrick and Paula McMullan Berta Mebel Ann Pomeroy-Meyer Pauline Meyer Microsoft Matching Gifts Program Robert and Jean Miller Vera and Stuart Newman Gayle Nowak Maura Perriello James and Shirley Petersen The Peyton Foundation Barbara Pinner John and Susan Prophitt Mary Sue and Holden Rigby Margaret Rogers Pauline Roux Michelle Scobie Barbara Snyder Craig and Terry Sollenberger Southern Loss Association DeCourcy Squire Kevin Swank, President, Premier

Restoration Inc. Beverly Thompson Daniel and Susan Tinkler Nita Uhlin Mia Upshaw Joel and Elizabeth Warner Wilda Warren Gloria Watts-Cox Foundation Douglas and Joan White Philip and Jolene White Ronald and Rene White Jean Witcher

“LLN: 21 years of serving the lymphedema community” The LLN is an organization of volunteers. No paid staff, only individuals who are dedicated to educate and create awareness for lymphatic disease. As director of the LLN, for these 21 years, words cannot express my appreciation and how proud I am of each of our volunteers for your selfless commitment. Let us never forget those who served and are now only in our memory – Joan White. Your LLN board consists of: Larry Ashmore, Treasurer Debbie Labarthe, Secretary and

FACEBOOK Elaine Gunter, Newsletter Editor,

Database Manager and Conference Moderator

Deb Cozzone, Administrator of the Bandages and Garment Fund, Conference

Shelley DiCecco, Grant Writer and Conference

Bret Martin, Website Gary Gunter, AV, Video, Power

Point, Conference Vicky Day, Event Chair Vera Newman, Book Chair Janie Smith, CEU Application and

Conference Committee Samantha Cannon, Health and

Wellness, Speakers Committee, Conference

Gwen Forbes-Kirby & Stephanie Kirkpatrick, Speakers & Conference

Planning Committees Billie Barron, Peggy Meyer, & Beverly Thompson,

Conference Registration Jane Thiery, Conference, Health

and Wellness Stacy Saraydar & Dolores Bradley,

Conference Laura Hoffman, Insurance, Conf. Joan White, Director The board welcomes 3 new members in 2015: Jade Gross, OTR/L, CSLT; Molly Nettles, OTR/L, CLT-LANA; & Peggy Meyer

Thank you, Lighthouse Lymphedema Network:

Please accept my gift/donation in appreciation for your efforts to support, educate, and create awareness about a serious medical condition called lymphedema.

Donor’s Name: ___________________________________________________

Address: ________________________________________________________________

Phone: (Home) (Work) (Cell) __________

E-mail: ________________________________________________________

Enclosed is my tax deductible donation of $_________, to be used for the General Fund _____, or the B.A.G. Fund ________

The Lighthouse Lymphedema Network is a 501(C) (3) non-profit organization. Please make all checks payable to the Lighthouse Lymphedema Network and mail to the LLN, 10240 Crescent Ridge Drive, Roswell, GA 30076. Call 770-442-1317 for information. You can also make a donation on-line by credit card: The donation page is: http://lighthouselymphedema.org/get-involved/donate.htm.

Change of Address Request: We try to keep our mailing list updated constantly; if you have any changes that should be made to your mailing or e-mail addresses, please send this information to the LLN address above, or by e-mail to elaine.gunter@comcast.net.

Remember: Don’t forget to give us your e-mail address if you want to be reminded about meetings, to receive the LLN newsletter as a PDF file (in color!), and to help us save mailing costs! elaine.gunter@comcast.net .

LLN’s website is http://www.lighthouselymphedema.org

Return service requested to: LLN Newsletter Editor 1625 Sprucewood Court Decatur GA 30033 USA