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Lymphatic Education & Research Network

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Nonprofit Overview

Causes: Health, Medical Research

Mission: Lymphatic Education & Research Network (LE&RN), formerly Lymphatic Research Foundation (LRF), is a nonprofit organization founded in 1998 to fight lymphatic disease and lymphedema through education, research and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

Results: LE&RN is at the forefront of raising awareness of lymphatic disease and lymphedema. Founded in 1998 as the Lymphatic Research Foundation, LE&RN provides annual grants to Research Fellows at the world’s leading universities, putting lymphatic diseases on the radar in the medical community, in academia, in government, and with pharmaceutical companies. Through LE&RN’s education programs, such as our popular Medical Symposium Series, medical practitioners, therapists, patients, and family members can benefit from hearing presentations given by the world’s leading lymphatic and lymphedema experts. LE&RN’s Patient Registry and Tissue Bank provides researchers with access to information about those afflicted with these diseases and can provide tissue samples from lymphatic disease patients to further research discoveries in the field. The quarterly journal Lymphatic Research and Biology delivers the latest developments and advancements in lymphatic biology and pathology from the world’s leading biomedical investigators. Through events such as the annual Walk for Lymphedema & Lymphatic Diseases and through advocacy efforts such as fighting for passage of the Lymphedema Treatment Act, LE&RN is building an extensive network of people looking for answers, demanding better treatment options, and, ultimately, finding a cure so that no one will have to suffer with lymphedema and other lymphatic disorders.

Target demographics: fight lymphatic diseases and lymphedema

Direct beneficiaries per year: fund researchers worldwide, and brought our educational symposiums to tens of thousands.

Geographic areas served: the United States and internationally

Programs: research, education and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

Community Stories

78 Stories from Volunteers, Donors & Supporters

2

Volunteer

Rating: 5

My son Zachary (16) has Lymphatic Malformation and is proud to be their Texas Youth Ambassador. We have been involved with the Lymphatic Education & Research Network since 2015, doing multiple awareness and fundraising campaigns and the support of everyone on the LER&N staff as well as other volunteers has always been OUTSTANDING! Their drive to help people who may not be able to help themselves is unprecedented. Their love and support has been touching and humbling, especially because lymphedema is a main focus, but their willingness to share Zachary's story has been amazing! We are truly grateful for this non-profit organization. We started Zac's Attack for a Cure to help support LE&RN! www.zacsattack.com

Donor

Rating: 5

This is an extraordinary organisation. The impact they have had on both research and government policy for lymphoedema is remarkable. Truly remarkable. They have raised awareness not just at a local level - helping thousands of families cope with lymphoedema and getting access to vital resources and support - but also at a national and government policy level to shape funding for lymphoedema.
This is an organisation that truly cares, and punches way, way above its weight.
A huge thank you to LE&RN for all they have done for my family and thousands of others around the US and the world.

Professional with expertise in this field

Rating: 5

Truly caring organization that provides valuable support and advocacy for the Lymphedema community.

Tiffanydetlefsen

Volunteer

Rating: 5

When your child gets diagnosed with lymphedema there are more questions than answers and very few places to turn to for guidance. LE&RN has been our saving grace in understanding our daughters lymphatic disease and has given us our drive to keep fighting for a cure. They are continuously creating change and advancements for lymphatic disease on all fronts-advocacy, education, and research. They are our hope for a better future for our little girl. Thank you LE&RN!

Previous Stories
2

Client Served

Rating: 5

My only hope for a cure is Lymphatic Education & Research Network. They are going to change my future
~Emma Detlefsen
Youth Ambassador

Volunteer

Rating: 5

LE&RN is always helpful and able to keep patients up to date with information. Whether you call or email, they are always glad to help and willing to go the extra mile!

Volunteer

Rating: 5

Through LE&RN I'm able to advocate for research to hopefully one day find a cure for this disease.

General Member of the Public

Rating: 5

They have given me great research. They have been there for me when i wanted to tell my story.

Barbara H.2

Volunteer

Rating: 5

Having found LE&RN has been very helpful in many ways. Through edcation, spreading awareness, finding others to connect with and research this non-profit has done and continues to help serve the millions who suffer with lymphatic disease.

Previous Stories
1

General Member of the Public

Rating: 5

I am a 6 year cervical cancer survivor that now suffers from lymphedema in my left leg. Finding LE&RN was a blessing for me. Not only did I not feel alone anymore but found a community of people dedicated to helping connect people to doctors and therapist, bringing awareness, finding cures is so important. The website is full of so much valuable information. The 5k walk in California was one of the most up lifting events I have done. Through them I became aware of a clinical drug trial and was lucky enough to be included. Medical research is so important and LE&RN is committed to helping the world find a cure.

Mo B.

General Member of the Public

Rating: 5

I have been afflicted with lymphedema for several years. The insight, education and testimonials are reassuring. I know I am not alone. Keep up the good work!

Sarah B.11

Volunteer

Rating: 5

I'm a volunteer with the California chapter and I've seen this nonprofit play a pivotal role and spreading awareness about this disease and how people can treat it and live with it.

Previous Stories
1

Client Served

Rating: 5

LE&RN has a wonderful collaborative culture that engages patients, caregivers and providers to work together to educate the world about LE.

Maureen S.5

Client Served

Rating: 5

LE&RN helps patients, medical personnel, congress & anyone else who needs info about lymphedema. This condition ruins lives & very little is available to improve the life of someone who has acquired this condition, often as a result of cancer treatment.

Tara F.1

Professional with expertise in this field

Rating: 5

Appreciative of the outreach and education efforts made by LE&RN on behalf of my patients

Client Served

Rating: 5

As a retired veteran having to deal with lymphedema, I had tried every veteran service organization (VSO) I could with no resolve or help. I then located LERN and the organization has saved my life. I believe in the organizations devotion to its members and its resolve to find cure. My wife and son have become involved and we consider LERN as an extended family.

Volunteer

Rating: 5

LE&RN changed my life. That simple. It brings together a group of people who had no hope, no cure. But now, I feel like we are fighting together to bring awareness and not feel so alone and islotated.

1

Volunteer

Rating: 5

There are so few medical professionals who are experts in the field of lymphatic diseases. There are no medications and micro-surgery is generally considered experimental by insurance companies. The standard of care, massage therapy and compression garments, is often not covered by insurance companies.
What a godsend the Lymphatic Education & Research Network has been. The website content is an amazing resource for the patient. It is encouraging to know that they are bringing awareness to this condition to the government and medical community as well as funding research.
After participating in the 4th annual Run/Walk to Fight Lymphedema & Lymphatic Disease last year, I decided to become a LE&RN volunteer.

Previous Stories
1

Client Served

Rating: 4

I've had lymphedema for nearly 17 years, after surgery for Metastatic Melanoma. From a patient perspective, I take great comfort in knowing that LE&RN is helping research move forward in the quest for effective treatments for lymphedema.
Right now, what I really benefit from is the education side of this organization, with the shining star being the amazing LE&RN website. The Symposium Series alone has a multitude of video presentations by leaders in the field of lymphatic studies. I have utilized the Ask The Expert feature to obtain information about my situation that my primary care doctor is not equipped to answer. And the LE&RN Expo is a great source of information from the various compression manufacturers.
I was happy to participate for the first time in the LE&RN walk in Santa Monica and am a supporting member of this wonderful organization.

1 Diane L.7

General Member of the Public

Rating: 5

The education and research done by Lymphedema Education and Research is amazing for those of us with Lymphedema!

1

Professional with expertise in this field

Rating: 5

Fantastic group to work with. They are doing great things to spread awareness of lymphedema. - American Society of Breast Surgeons Foundation

1

Client Served

Rating: 5

My pt therapists are so knowledgeable. They receive great training and think outside of the box to get my legs under control.

1

Advisor

Rating: 5

LE&RN helps to put my disease on the map in a world that is still shockingly unaware. In the US 10M people suffer from lymphedema, most of them like me, as a result of surviving cancer. Imagine the irony that so much attention is directed at saving lives and then so little is done to make life worth living. Lymphedema is not a rare disease although it can feel awfully lonely out there. It is through LE&RN that all of us can know better. There is a great deal of awareness work to be done on all levels and around the world. Please support LE&RN and pay it forward. Signed M. Driessen

1

Professional with expertise in this field

Rating: 5

This non profit does an excellent job in advocating lymphedema worldwide.

1 lisaann1212

Donor

Rating: 5

LE&RN Had the information I needed to realize I had Lymphedema. They were my starting point so I could tell my doctors what I needed because my doctors were clueless.

Previous Stories
3

Volunteer

Rating: 5

This group helped me uncover what disease I truly had after years of misdiagnoses. Without the resources this group makes available, I may still be searching for answers.

1

Volunteer

Rating: 5

LE&RN is the only hope for a cure for our 10 year old, born with primary Lymphedema. You will not find a more dedicated organization in the world of Lymphatic Disease.

Previous Stories
3

Volunteer

Rating: 5

LE&RN is our saving grace. They are the hope in this grim diagnosis. Advocacy, research and ultimately a cure while providing support-this is LE&RN. They give us strength to, in her words, "kick lymphedema's butt"

1 Jessica F.6

Client Served

Rating: 5

LE&RN was crucial in the discovery of my diagnosis of Lymphedema and then in gathering information for the management of it. The research and resources from this organization are imperative to those of us living with Lymphedema.

1

Client Served

Rating: 5

LE&RN has made a tremendous difference in my life. Not only is it the single best resource for information and research about Lymphedema, but it has connected me with many others who suffer from this disease. Thank you!

1

Professional with expertise in this field

Rating: 5

I was graduated of faculty of medicine.after that ,I specialized in vascular surgery field.there are many patients suffer from lymphedema for many years without hope.After searching and contact health professionals ,I can say we could defeat this disease soon.What I am trying to do is gathering experience all over the world to help lymphie people in my country and global wise

1 Jeni V.

General Member of the Public

Rating: 5

Lymphatic Education & Research Network is a wonderful organization that has helped many with Lymphadema.

1

Volunteer

Rating: 5

Lymphedema is a very isolating disease. No one knows about it or understands it. And there is no cure. Doctors and clinicians don't learn about it in medical school. I lived with this disease for 15 years before I knew anyone else that also had it. I am so thankful I found LE&RN 2 years ago. Being a member of LE&RN has changed my life and I am so grateful for everything they do. And what they do is so wonderful. They are the vehicle that brings doctors, clinicians, vendors, researchers and patients together. They also provide educational materials about the disease with their symposium series. They provide lobby days and opportunities for advocacy. They provide grants for research so hopefully one day soon there will be a cure. I am proud to be part of such a wonderful organization. They have truly changed my life. Thank you LE&RN!

2

Client Served

Rating: 5

When I found out that I have breast cancer, I called LE&RN to find out what questions I should ask my breast surgeon about her plans to help me avoid or handle lymphedema. I received great assistance with good questions. I also information on a fairly new surgical strategies that would also help me to possibly avoid this disease, too often a secondary result from the removal of lymph nodes during cancer surgery. I was able to connect with Memorial Sloan Kettering doctors for my mastectomy and reconstruction surgeries, who are involved in lymphedema research and who apply these new techniques. I highly recommend that people support the work of LE&RN so that more doctors receive training in this preventative surgery and therefore, more women and men are able to live positive, familiar lives post-surgery!

1

Volunteer

Rating: 5

I've had Lymphedema for over 12 years and likely had Lipedema for over 20 years. I becane a member of LE&RN in 2015 when I found out what LE&RN does. I then started a Colorado Chapter of LE&RN in 2016. LE&RN is a life-changing non-profit organization.

1

Volunteer

Rating: 5

LE&RN is an outstanding non-profit providing a great resource for patients, therapist, doctors, care-givers and all who need or want information on lymphedema and lymphatic diseases. LE&RN is creating awareness and taking action on lymphedema and lymphatic diseases. I am honored to volunteer with LE&RN and be a voice for the millions who suffer from lymphedema and lymphatic diseases.

Previous Stories
3

Volunteer

Rating: 5

LE&RN offers a wealth of information and support globally to all who suffer from lymphatic diseases. As someone who suffers from Lymphedema, LE&RN helped me find a doctor to treat my condition.

Volunteer

Rating: 5

I have secondary lymphedema in my right leg, a result of cancer treatment (lymph nodes removed + radiation). For a long time I felt very alone until I learned about the Lymphatic Education & Research Network. Through LE&RN I have made many friends who also have to deal with lymphedema on a daily basis. Through LE&RN I now have a voice in the Lymphedema and Lymphatic Community so that we can continue our fight for better awareness, better treatments, better health insurance coverage. LE&RN and its paid and lay leaders are incredible.

Previous Stories
2

Volunteer

Rating: 5

I have had secondary lymphedema in my right leg for over seven years. The Lymphatic Education & Research Network (LERN) is my go to source for scientific data, community support, updates on the latest in compression and devices, our annual fundraising walk and more. Without LERN , those of us with Lymphedema would be lost. It is a warm and incredible resource and community.

Read more

Volunteer

Rating: 5

As a patient living with primary lymphedema for 20 years, I could not have found the resources necessary to manage my medical condition without the help of the Lymphatic Education and Research Network. The LE&RN team are warriors, laser focused on their mission of wiping out lymphatic disease. They have armed me with information to seek proper medical treatment, they have connected me with a network of people who have provided critical support to cope with the disease, and they have developed concrete action steps that I can take to join the fight against lymphatic disease. Most importantly, they have given me something that lymphedema nearly stripped away - hope.
- Britta Vander Linden, LymphedemaDiary.com

2 Candy-Cornett

Donor

Rating: 5

I cannot say enough wonderful things about this great group of people. They become like family when you get involved by donating and volunteering. I found out about this wonderful group through my favorite actress of all time Kathy Bates. She is the national spokesperson for LE&RN. As her #1 fan I have made her passion my passion. It is through her that I learned about this nonprofit and how many millions of people who suffer from these awful lymphatic diseases around the world including herself. She along with other celebrities have used their status to bring awareness out of the dark and into the limelight. Kathy joined LE&RN and supporters going before Congress twice, once in 2017 and again on May 10th and 11th of 2018 to ask for funding for education and research. LE&RN has accomplished in getting lymphatic diseases covered under insurance in a few states. We have so much more to go, but with the continuing support from everyone involved, I can see these lymphatic diseases being covered by most insurance companies in all states. I have been a member of LE&RN for a year now. In honor and support of Kathy and LE&RN, for last two years, I have flown out to California for the annual lymph run/walk to volunteer my time and to bring an extra donation. It also allows me the opportunity to meet and speak with my favorite actress of all time. I also want to thank Colleen McGuire who runs the events for LE&RN and William Repicci, LE&RN Executive Director and CEO and all others who have graciously welcomed me into their family.

1

Volunteer

Rating: 5

LE&RN is an outstanding non-profit: they effectively disseminate educational information to their membership and the general public on lymphedema and related lymph system malfunctions; they lobby governmental bodies to obtain the rights, benefits and funding which should legally accrue to sufferers; they initiate and fund R&D as well as professional education in the field of lymphatics. They are responsible for bringing lymphedema out of the closet into the arena of major health malfunctions deserving of a cure. I am proud to be a member.

1 Shana G.

General Member of the Public

Rating: 5

I love that LE&RN has webinars that are free on topics that are unique and difficult to find. They really bring together a diverse group. Recently as this week a lecture by Mr. Klose from Klose Lymphedema school spoke on benefits of traditional manual lymph drainage versus the use of pumps and or wraps for reduction. I learned so much. It also give me a legitimate resource to refer my physician to who needs more training in Lymphedema.

2

Volunteer

Rating: 5

LE&RN offers a wealth of information and support globally to all who suffer from lymphatic diseases. As someone who suffers from Lymphedema LE&RN has help me find a doctor to treat my condition.

3

Donor

Rating: 5

I'm so grateful for LE&RN; this non profit keeps us up to date on research and everything possible that can be done to help us with Lymphedema. We can feel confident that we are receiving the best knowledge that is out there about this disease

2 Susan G.2

General Member of the Public

Rating: 5

I have primary lymphedema and struggle to find resources to learn about it. I read about the research being done on low carbohydrate (ketogenic) diet from this site. Within 2 months of trying this diet my limbs were measured and all 4 had decreased by 15-16%. My Lymphedema Dr and his whole team were unaware of the research. Thank you Lymphatic Education and Research website. Best advice I have received so far!

2 katiedarcy

Client Served

Rating: 5

I have Lymphedema and live on the Delaware Shore. lEARN has offered me a sense of community and eased my isolation. I have learned about treatment, and procedures to aleaviate the symptoms. The doctors in my area know very little about this disease and I am so greatful to LEARN for empowering me. I would be hopeless without LEARN. Because of this organization I can control the disease, work full time and participate in my community. I recommend the website to everyone I meet who suffers with Lymphedema, and they are relieved to know they are not alone. It is so important to educate not only the patients but the DOCTORS! More has to be done to treat this disease. Surviving cancer was one thing, but being sentenced to a life with Lymphedema is the harshest reality of my life. It has to be cured, we just need more research.

2

Professional with expertise in this field

Rating: 4

Personally and professionally I have been helped immensely by LE&RN.... sharing their research and knowledge is invaluable. It is a salient feature that their commitment in this field to be commended.

2

General Member of the Public

Rating: 5

After breast cancer and a lumpectomy, I developed lymphedema in my right arm. No one told me after the breast cancer surgery about lymphedema. Only after my arm swelled and I went to a physical therapist did I learn not to lift more than 5 lbs. Some of my pots and pans weigh more than that! When I heard Kathy Bates talk about her lymphedema, and the orgaanizaton LEARN, I joined immediately. LEARN has given me hope for a better quality of life, living with the lymphedema. Their research on options to take care of lymphedema, especially transplanting lymph nodes from different areas of the body. LEARN is dedicated to raise the public awareness of this dreaded disease. More research needs to be done to find a cure. LEARN is on the cutting edge of research and helping to raises the awareness of the medical field. I don't think doctors know that much about lymphedema. I have been hospitalized for six days, twice in a year and a half from cellulitis in my arm. I had peeled an orange with my fingers and one finger became sore. Sure enough, it caused cellulitus. I feel confident that LEARN will find a cure, and educate patients as well as the medical field and lead the way in finding other options.

2

Professional with expertise in this field

Rating: 5

As a lymphedema and wound therapist I rely on LE&RN to get updated information to keep abreast of any of new developments in patient care. I also know that it is a site that I can send curious patients to where they will get tried-and-true information about their diagnosis that will help in their compliance and adherence to care. Other sites may give anecdotal info but here I can trust what is on the site as best practice. Thanks for making my job easier and my patients healthier.

2

Volunteer

Rating: 5

It's a great nonprofit, that helps educate about the lymphoderma.

2 Fleur N.

General Member of the Public

Rating: 5

LE&RN are passionate and committed to raising awareness of Lymphedema and providing a network of support to sufferers. Their work is also vital in raising funds for research and a potential cure. This is a great non profit!

2 Becca K.

Volunteer

Rating: 5

LE&RN has helped so many people! The Lymphedema and Lymphatic Disease community are getting the attention they need to fight LE and LD. I am so proud to be a part of this organization. Stay strong and fight on!

Previous Stories
2

Volunteer

Rating: 5

LE&RN has opened the eyes of the world. Lymphedema and lymphatic diseases are more common than anyone would like to believe. Their dedication to Education and research is phenomenal. So many changes in the lymphatic community have happened over ther years because of the research this organization helps fund. As a Lymphedema patient, I can honestly say they were a lighthouse in the midst of a storm. Thank you LE&RN!!!

2

Professional with expertise in this field

Rating: 5

I am a Newly certified CLT in Saskatchewan, Canada . I requested to join this support group to help me design a lymphedema clinic in Saskatchewan. I wanted to hear the stories of those affected with lymphedema so I can create a clinic that helps lymphedema suffers in my province. Saskatchewan does not have a support group and after seeing the support and education this group provides its members I would love to try and create a support group similar to this one on Canada. .I give this non profit group a gold star! I learn so much about the daily struggles , finding a CLT or knowledgeable doctor, compression questions and just the overall support each member provides to one another, its amazing!Lymph Strong is the best..

2 Ellen W.1

Client Served

Rating: 5

LEARN does an excellent job spreading knowledge about lymphedema. This organization is working on getting The Lymphedema act passed. This would help lymphedema patients obtain insurance for lymphedema treatment.

2

Donor

Rating: 5

LE&RN has changed my life with its support and cutting-edge research and information. This organization gives me hope for a cure for Lymphedema. I have had this disease for 23 years. I have been a supporting member for almost 2 years.

2 Keri Therese N.

Volunteer

Rating: 5

I Love IT! They are so Supportive and knowledgeable about Lymphedema!

2 Lisa A.2

Donor

Rating: 5

LE&RN was there when I realized my unexplained swelling was not going away but my doctor was not taking me seriously. With LE&RN's great information and assistance, I was able to advocate for myself and get the treatment I needed. The staff is wonderful and kind, and the organization as a whole is helpful and necessary. Love LE&RN!

1

Client Served

Rating: 5

This is the only charity of its kind and without it we would still be back in the dark ages without any social or political recognition or understanding of Lymphoedema and its effects on those of us profoundly personally (physically, socially and psychologically) impacted by Lymphoedema. Finding out about LE&RN seven months ago has given me hope that there may one day be a cure for the Lymphoedema that has utterly turned my once athletic life and day to day life upside down since 2015. Being able to cling to hope, knowing the dedication LE&RN has to myself and others with Lymphatic diseases, is in large part what has helped me overcome the deep depression I found myself in for months after diagnosis 16 months ago. Without LE&RN, research/cure funding would not exist as it now does, political/governmental initiatives would not exist, and those of us enduring dehabilitating lymphatic diseases would be without hope that we may ourselves benefit from a cure in our lifetime. LE&RN has made it possible for me to feel I can and want to stand up and fight the disease, and win!!

1

Client Served

Rating: 5

I have been a supporter of this charity for over 4 years now. This year they helped get NYS honor my 5 year old as a youth ambassador for Lymphedema and Lymphatic Disease and recognize Marh 6th as World Lymphedema Day! We need more awareness, support, and research to help our loved ones fight this disease! LE&RN strives for just that.

1

Volunteer

Rating: 5

Thanks to LE&RN so many from around the world are able to come together and fight Lymphedema.

When I met the folks at LE&RN back in 2011, I felt alone and afraid of what my future held. Now 5 years later and I have met thousands of Lymphatic patients and with the help of LE&RN been able to direct patients to them for education and hope. Without Research our hope would be totally lost.

Thank you to LE&RN for continuing to provide hope, faith, education and research!!!!

1

General Member of the Public

Rating: 5

LE&RN is an excellent source of education and compassion for lymphatic diseases. I've had Lymphedema and lipedema for most of my adult life and finally found a community that gives so much back to research and education. They also have wonderful people who volunteer for them

2

Volunteer

Rating: 5

I was one of many with lymphedema who was misdiagnosed for years and years. I went from doctor to doctor, was put on diuretics for "water weight", and found that no one could help me with the enormous pain, stiffness and swelling in my lower legs and feet. I finally found out what I had only two years ago, at the age of 63, when I was introduced to a physical therapist with a specialty in treating lymphedema. I still felt very alone, until one night when my husband was flipping TV channels and happened upon Kathy Bates being interviewed about her own battle with lymphedema and the organization she was spokesperson for -- LE&RN. I was thrilled and immediately went on the website to sign up for the newsletter. I now hope to encourage and support others as co-chair of LE&RN's Florida Chapter. This is a very worthwhile nonprofit, and an organization which deserves recognition for the help and awareness it provides to both those who have lymphedema and those providing treatments and hopefully one day cures.

2

General Member of the Public

Rating: 5

Being in the dark for so many years thinking I was the only one out there until I came across LE&RN. This organization has not only helped me find myself again but it has given me hope with the amount of research that has been going on thanks to them. I am now a Co-Chair for the Missouri Chapter and very proud to be part of this organization. I am no longer a lone.

3

Volunteer

Rating: 5

Born with Lymphedema, I have had many experiences less than ideal with those in the medical field. After so much confusion, I found LERN. I have learned so.much from the connections I have made with others that live with Lymphedema everyday! LERN is doing amazing things!!

3

Board Member

Rating: 5

LE&RN has commenced a very important mission. Lymphedema, both genetic and acquired, is severe and debilitating disease surrounded by an unusual social and medical stigma. There are only very few existing treatment options and virtually none in development. The only option is to increase the social, political, governmental, institutional and financial awareness, transparency and support for the necessary new treatments. LE&RN has managed in the past three years to increase the awareness for the disease and suffering patients with minimal resources. However, there is still long way to go to reach the same amount of broad public awareness, support and research as has been generated to support for instance the victims of Multiple Sclerosis. Lymphedema patients are in high need of new medical solutions and we all have to support LE&RN as much as we can!
Riku Heikki Rautsola, Ph.D.

4

Board Member

Rating: 5

As a board member and a parent of a child with primary lymphedema, LE&RN is THE organization that gives promise and hope to all those suffering with lymphedema and lymphatic diseases. Every day LE&RN is gaining ground in bringing awareness to lymphedema. Through this awareness and the raising of dollars to fund research, LE&RN is making a difference for all those affected by lymphatic diseases.

4

Volunteer

Rating: 5

The Lymphatic Education & Research Network is doing incredibly important work. They are bringing awareness to an under-represented, under-discussed health condition (lymphedema) that impacts millions of people worldwide. They are raising funds to support medical research, in search of better treatments and, ultimately, a cure for lymphedema and other lymphatic diseases. The individuals at LE&RN are committed, communicative and conducting work of the utmost importance.

4

Donor

Rating: 5

I came to know the word Lymphedema 9 years ago. I had been dealing with horrible bouts of infections on my legs and even cellulitis multiple times. When I tried to speak with doctors and other medical professionals about my legs, all they could do was blame it on my weight issues instead of actually taking the time to learn about the disease. It has been such a struggle to not only live with but teach others about this condition. I came across LE&RN earlier this year and it has changed my life. I became a member after reading about all that LE&RN is doing for "Lymphies" like me. I found that Kathy Bates was holding the first annual 5K in California this year, so I knew I had to be apart of it and flew from Colorado just to walk my first 5K and spread awareness for this disease that has been sheltered and swept under the rug for far too long. After years of feeling alone, I finally feel like I have a family who knows what I go through on a daily basis thanks to LE&RN. LE&RN is saving lives!

5

Volunteer

Rating: 5

At 6 weeks old, our son was diagnosed with a rare lymphatic disorder called Intestinal Lymphangiectasia. As a result, he has a restricted diet, loses protein through the gut and has lymphedema in the abdomen and lower extremities. There is minimal research and no one had any answers for me in order to help my son. Through extensive searches, I came across LE&RN. Immediately I knew this was the organization that was going to help my son and those like him. Through the 4 plus years we have been involved research has been funded, symposiums are provided for patients and professionals and the diagnosis of lymphedema has been made known. In 2011, my son became the youth ambassador for LE&RN. He has been to Albany twice to advocate for those affected by lymphatic disorders with LE&RN staff standing beside him. Besides funding research and working towards a cure, LE&RN has given my son confidence, hope for a cure and the realization that he is not the only one suffering with lymphatic disorders.

I have watched this organization grow through the years and look forward to the work that is to come. I am proud to have my son as the ambassador and also being involved in the NY state chapter.

5

Volunteer

Rating: 5

My daughter Emma was diagnosed with Primary Lymphedema from her toes to her belly at 18 months old, she's 7 now. At first we were thrilled to finally have a diagnosis, until we realized there was no where to turn for efficient help. We fought with our insurance company for 6 months before they would even cover the most basic treatment (MLD) and are still fighting to this day on issues such as compression garments. The lack of knowledge surrounding Lymphedema in the medical community is astonishing. As a mother, these kinds of issues were literally killing me-after being diagnosed with a panic disorder due to my daughter's disease and watching her suffer through 3 bouts of hospitalizations due to cellulitis, I knew if I didn't help to bring about change, no one would. That's when we found Lymphatic Education & Research Network. They are our saving grace, mentally and physically, in bringing about change to the disease that affects every decision we make, every day of our lives, in order to keep our daughter safe and healthy. In the past 2 years since we've joined forces with them, we've watched Lymphedema establish a name for itself. We've watched LE&RN fund groundbreaking research and helped them to pass a bill that was ignored for 12 years in the NYS Legislature. Their advocacy for all lymphatic diseases is top notch. LE&RN is the organization that is going to change the lives of everyone who suffers with a lymphatic disease for the better....they already are. LE&RN has changed our outlook of Emma's future, it looks brighter and healthier for us all and without them, I'm not sure where we would be. Lymphatic Education & Research Network-from the bottom of our hearts, we thank you for changing our lives!

7

General Member of the Public

Rating: 5

My daughter was diagnosed with Lymphedema at age 11. She was told by her doctors she would just have to live with her swollen foot. It wasn't until she was in her early 20's, and decided to do her own research that she was able to get some answers. Those answers came from LE&RN. Through this wonderful organization she was able to get a better understanding of what was happening to her. She has since become very involved with LE&RN and wants to spread the word to help others who have Lymphedema know that there is help out there.