NLN's Lymph Science Advocacy Program

Bonnie Pike has put her LSAP training to Work!

Introduction

Bonnie Pike, who shared her experence for this story, is one of the founders of the organization StepUp-SpeakOut. Through this work she is fulfilling the promise of the LSAP program. If you have questions about the LSAP program, or StepUp-SpeakOut you can contact Bonnie through their website.

Yes, You can!

What if you could meet the people who plan and carry out lymphedema research worldwide? Or sit down and talk with the leading doctors, scientists, and therapists who are working on break-throughs in lymphedema prevention, cure, and treatment?

Every two years the National Lymphedema Network holds a conference for lymphedema professionals from all over the world. They meet for four day of presentations, workshops, and networking. If you are a patient who's interested in gaining new knowledge and sharing it in your own community, you may be selected to join them as part of the NLN's Lymph Science Advocacy Program (LSAP).

For each conference, five or six patients or caregivers are chosen to attend alongside the professionals as LSAP students. They both represent the patient viewpoint to the professionals, and learn the skills and information they need to share their new knowledge back home with fellow patients, medical personnel, government policy-makers, and the public.

Five or six patients are chosen to attend each conference, representing both primary and secondary lymphedema. They are allowed full participation in all the conference events, and they enjoy special additional privileges as well. For instance, before attending the conference they receive personalized tutoring in the medical and scientific aspects of lymphedema from experts in both clinical and research fields. And once they arrive at the conference they attend early-morning conferences with expert tutors who can answer any questions that come up in the workshops and research presentations.

Start Planning Now!

Applications will be available on the NLN website several months before the next conference date. But it's not too early to begin preparing now.

No financial help is available through the NLN for this program, so when you are selected you will be responsible for conference fees, transportation, accommodations, and some meals.

If that is out of reach for you, consider organizing a few fund-raising events with the help of your local support group or therapy center, neighbors or friends. You will also need letters of recommendation from those who know about your interest in lymphedema advocacy, and a brief curriculum vitae (CV) explaining how you've been putting that interest into action.

If you have yet to begin working on your own advocacy ideas, it's not too late to start. For example, past LSAP students have been active in lymphedema support groups both locally and on the web, worked to educate their healthcare professionals, supported legislation to improve lymphedema care, or helped to interest their local news media in doing public interest stories about lymphedema.

As a 2008 LSAP graduate, I wish all lymphedema patients and caregivers could participate in this program. The experience of meeting with medical and research professionals and industry representatives to learn about all the latest developments in this field is empowering. And representing the needs and dreams of the lymphedema patient community is exhilarating.

But the best part is the personal experience of the passion of so many professionals from so many places throughout the world. Isolated in our communities, we lymphedema patients too often feel alone and hopeless; being a part of the Lymph Science Advocacy Program means discovering and connecting with the amazing network of all those who have dedicated their lives to making a difference for us.

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Category: Interviews