Lupus Foundation of Mid and Northern New York     

Lupus Foundation of Mid and Northern New York
is dedicated to improving the quality of life for lupus patients and their loved ones by providing education, support and outreach services, and promoting programs of awareness, advocacy and research. 

We understand the isolation and fear lupus patients often feel when they are first diagnosed.  We also recognize the impact the disease can have on other family members.  Our education and support programs are designed to increase patients’ knowledge and self-efficacy  to give them self confidence to manage their disease.  By empowering patients to actively participate in their own health care hopefully improves disease outcome and maximizes their quality of life. 

We are also committed to increasing community awareness and program revenues by focusing public attention on lupus.   We realize that early diagnosis and treatment are vital components in reducing the physical and economic impact of the disease.  Our organization strongly supports increased research funding that will enable scientists to identify the cause, develop faster diagnostic measures, safer, more effective treatments, and ultimately, discover the cure.

All of us at the Lupus Foundation of Mid and Northern New York, Inc. are proud to support The Lupus Research Institute and have donated $84,500.00 to the LRI in the past 6 years.  We are also a member of The Lupus Research Institute National Coalition, The Patient Voice for Lupus Research. The LRI is a collaboration of lupus patients, their families, physicians, researchers, academia, and patient advocacy organizations. It is fueled by the passion of its supporters; especially patients and their loved ones.  The LRI has made tremendous strides in the lupus research community with many of their initial grants now receiving NIH funding, and we are extremely proud of our partnership with the LRI, it has become our beacon of hope, brightly shining in the stormy seas of lupus.

Lupus Foundation of Mid and Northern New York, Inc. provides representation regarding important lupus-related issues at state and national advocacy events.  Our participation in these public policy forums puts a face on this disease and gives lupus a voice while attempting to make a positive difference in the lives of others.

Our services include:

Education & Awareness  

• Telephone hotline and local county
  physician referral list 
  
  
• Informational brochures on all aspects of the disease
  
  
• Quarterly Newsletter and national publications
  
  Summer 2008 Lupus Communique
  Winter/Spring 2008 Lupus Communique
  Autumn 2007 Lupus Communique
  Summer 2007 Lupus Communique
  Spring 2007 Lupus Communique
  Winter 2007 Lupus Communique
  Autumn 2006 Lupus Communique
  Summer 2006 Lupus Communique
  Winter 2006 Lupus Communique
  LRI Discovery Update Fall 2008
  LRI Discovery Update Spring 2008
  LRI Discovery Update Fall 2007
  LRI Discovery Update Spring 2007
  LRI Discovery Update Fall 2006
  LRI Discovery Update Summer 2006  
  LRI Discovery Update Spring 2006 
  LRI Discovery Update Fall 2005  
  
  
• Monthly facilitated support groups
  
  
• Annual Educational Symposium
  
  
• Quarterly educational presentations by medical professionals
  
  
• Participation at the Annual NY State Fair Lupus Booth Exhibit

• Up-to-date treatment and research information
  
  
• Discounted books and literature
  
  
• Displays at health and wellness events
  
  
• Patient empowerment resources * 
  "Be a Partner in Your Own Healthcare" 
  and Personal Medical Information

Advocacy & Research                              

• Participation in state and federal public policy issue events

• Advocacy for public policies to increase government funding for lupus research 

• Advocacy for public policies to improve patient access issues  

• Advocacy for better policies for government-funded assistance programs 
                            

• Clinical trial information and participation opportunities  
  Participating in Clinical Trials

• Current research information

• Drug Resources 

• Representation at the LRI Annual Scientific Meeting

*Special thanks to Team LUPUS participants for developing our patient empowerment resource materials:  Kathleen & David Arntsen, Sandi Frear from Lupus Foundation of Mid & NNY and Honi Kurzeja & Judith Anderson from Lupus Alliance of America.