LFA, PNW would like to improve and expand programs, services, events and membership throughout our large three state region. Many areas of Oregon and Washington are currently underserved in terms of lupus education, support and advocacy. In the months and years ahead we will be working hard to correct this situation.
While LFA, PNW has strong support and guidance from our Washington D.C.-based national headquarters, with its cutting-edge educational materials and program designs; we are a grass-roots non-profit with only one full-time employee, CEO, Celia Y. Weisman and a part-time employee, Nila Tyrell, Administrative and Program Coordinator. To realize our dream of growth, we need more volunteers who can bring diverse talents to our organization. Here is a list of ways to get involved with LFA, PNW, and help us realize the vision of a world without lupus. Please join us.
We welcome your participation in the following committees:
Lupus Awareness Month Planning
Put together Put on Purple at the Pier when we turn the Seattle Great Ferris Wheel purple, and other Put on Purple events throughout our three states.
Assist in organizing local community programs that will provide updates on developments in research, treatment, and coping with lupus.
Reach out to representatives at the local and state level about issues involving the lupus community. This includes coordinating letter writing campaigns, petitions, and face-to-face meetings with legislators and other government officials.
Outreach to Underserved Communities
Develop connections with underserved communities regarding the importance of early lupus diagnosis, consistent health care, good communication with health care providers, healthy nutrition, exercise, stress reduction, and other strategies that help people cope with lupus.
Walk to End Lupus Now Planning
Join us as we coordinate the Chapter’s largest fundraising and lupus awareness events!
The EMBODY Program
You could help advance lupus research. Consider taking the next step by enrolling into a global clinical research program called EMBODY.
The EMBODY Program consisting of two research studies is testing the safety and effictiveness of an investigational study drug beaing developed for the treatment of lupus.
You may qualify to participate in the EMBODY program if you are:
- At least 18 years of age
- Diagnosed with systemic lupus erythematosus
- Not pregnant or nursing
- Available for 27 visits over a period up to 1 year
If you qualify, you will receive:
- Study-Related Exams
- Study-Related Laboratory Testing
- Investigational Study Drug or Inactive Placebo
To learn more about the EMBODY program study or to see if you qualify, go to www.EMBODYProgram.com
*Most committees meet on a monthly basis. Specific action steps will be defined for each member to complete with clearly defined deadlines. Committee service for LFA, PNW will be enjoyable and rewarding. Geography ought not interfere with your participation, as members can be teleconferenced in to meetings.
One very special group is our Sunshine Committee. This is a group of dedicated and caring people living with lupus who make phone calls to others whose lives are impacted by lupus, and who need urgent support. A short training with the Chapter CEO is required to join this committee. Both training and committee service can be done via telephone, skype or face-time.
Facilitate a Lupus Support Group in Your Area
Support group facilitators fulfill a vital component of LFA, PNW’s mission to improve the quality of life for all people affected by lupus. As a support group facilitator, you would help create a place for people with lupus to be themselves and come to terms with a diagnosis of lupus and the way their disease affects them as individuals. You would also help disseminate information, including LFA educational materials and community resources.
We ‘d like to expand the number of our support groups offered throughout the Pacific Northwest region in 2014. If you have lupus, or if a family member or friend has lupus, and you’re interested in being trained as a lupus support group facilitator, please contact us as soon as possible. We are planning new training and refresher training sessions in each of our three states, to be held either in January or February 2014.
Volunteer in the Chapter Office
Do you like filing, compiling information packets, helping with large mailings, designing forms, making follow-up calls to confirm attendance at events, or post information about events on assorted media calendars, and other office functions? Or would you prefer to post event flyers in community centers, coffee shops, libraries? If you like to help out in these ways, please get in touch.
Opportunities for People with Specific Skills, Talent or rising Professional:
• IT skills: Chapter website, social media
• Writers: grants, bimonthly newsletters
• Photographer, Graphic Designer
• Healthcare Professional – speakers, presenters, mobile clinics, educational series
Contact LFA, PNW Chapter: 1-877-774-2992