Sjogren Syndrome Support Group Plan

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26/07/18 Health And Social Care Reference this

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  • Punit Dave

TABLE OF CONTENT (JUMP TO)

INTRODUCTION

Overview

Challenges

PROPOSED PLAN

Leverage Points

Effectiveness

Success Metrics

Future Planning

Schedule

Staff

Budget

CONCLUSION

REFERENCES

INTRODUCTION

OVERVIEW

In partnership with University of Houston Medicine and Technology department and American Association of Rheumatologist we are the only national nonprofit support group to provide education, awareness, regular checkup, and research for Sjogren syndrome. In autoimmune disease the immune system attack and destroys the monsieur producing glans throughout the person’s body. Sjogren is the second most common autoimmune disease in United States; which effecting estimated 5 million people in United State. The Sjogren is three times more common than related disease like, Lupus, Multiple sclerosis and it is more common among women then breast cancer. The nine out of the ten Sjogren patients are women. The Sjogren syndrome patients suffer from verity of symptoms that range from dry eye and dry mouth to chronic fatigue and muscling joint pain. This disease also effect internal organs and internal nerve systems. In anticipation of people become familiar with disease and its symptoms; it will remain difficult to diagnose everyone who suffering from Sjogren syndrome. That’s why our community continues to fight for patients who aren’t able to explain their diseases or confused by the many facets of the diseases. Our community dedicated to raising awareness, so some day the patient diagnoses with Sjogren then he or she will have heard of it and will know where to turn for support and guidance.

CHALLENGES

With Sjogren the correct diagnosed is often difficult to obtain. It will take around 4.7 years to correctly diagnose the Sjogren, because the Sjogren’s symptoms often mimic other condition and diseases. Sjogren is often overlooked or misdiagnosed. Patients will discuss dry eye with optometrist, dry mouth with their dentist or joint pain with their primary doctors. Each symptom alone wouldn’t suggest an autoimmune disease but couple symptoms together will lead physicians to suspect Sjogren. This is why increasing awareness among the general public is very important. We strongly recommend Sjogren’s patients get treatment form one doctor. Changing the doctors won’t cure Sjogren but it often creates confusions among the doctors and patients. Getting treatment from multiple doctors’ also lead to wrong medications, diagnostic and it will hurt patients financially and medically. With a help from university of Houston medicine department and AAR we provide many medical checkup, medical guideline and nutrition plans to our members so, they always get right advice and treatments.

PROPOSED PLAN

LEVERAGE POINTS

Sjogren Syndrome support Group is the leading advocate for Sjogren’s patients. We have dynamic volunteers, medical, scientific advisory board and researchers who work in Sjogren’s and recognized nationwide. Together with this volunteers and healthcare professionals, our group has been able to implement programs such as the first ever clinical practice guidelines for Sjogren’s. This guideline gives Sjogren’s physicians a road map for how to treat, monitor and manage sjogren in their patients. This is just one example of our support group on how we achieving our mission and changing the life of sjogren patients.

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EFFECTIVENESS

Sjogren Syndrome Support Group stands on our founding principal of putting the patients first. From our 10 plus patients run support groups to our hundreds technical volunteers we serve our members with an ability to connect with others who have Sjogren’s. Our programs of educations always involve our volunteers to help review our educational materials, conference topics and Sjogren’s content. Our research grants from our sponsors are also awarded based on innovations. It we will help us to change the field of Sjogren’s the fastest to estimate the greatest gain for sjogren patients. I believe our group is effective because of patient voice is never forgotten.

SUCCESS METRICS

  • What are the metrics of success for our group?

The Sjogren Syndrome Support Group measures the impact and success by many variables. For example our support group manages over 50 support groups in Houston area. Prints many newsletters and distribute hundreds of brochures each year. The American association of rheumatologist distributes important guidelines to each patient and provides the advice to join our support group. It will give patients an opportunity to share their thoughts with others and help others to overcome from this situation. Most importantly our support group always uses metrics to gage the success of every campaign, every program and every project. We set goals, we set objectives and then we evaluate them against the simple questions of how do these impacts on life of Sjogren’s patients.

FUTURE PLANNING

Additional support from CCHP would help us expand our education and awareness programs. This support would enable us to attended more professional conferences to educate healthcare professionals. Additional reassures would also allowed our support group to distribute materials to more specialist which would ultimately assist us to reaching patients who may be suffering from particular symptoms, but didn’t realize the cause could be a systemic diseases such as Sjogren. Finally, for support the patient and cure of Sjogren, more funding needed that way our support group can produce national awareness campaign and reach the 3million penitents there are not yet diagnosed.

SCHEDULE (May 10 2014 – August 30 2014)

Things to Do

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

Meeting

8-9 am

8-9 am

8-9 am

8-9 am

8-9 am

8-9 am

8-9 am

Group Discussion

9-10 am

9-10 am

9-10 am

9-10 am

9-10 am

9-10 am

8-11am

Checkup by Doctors

12-2pm

11-2pm

11:30-2pm

Community work

4-7pm

Science/Research Education Classes

11-2pm

11-2pm

11-2pm

11-2pm

STAFF

We excited about future of Sjogren and we really around pace for great discoveries, but in order to make Sjogren a household name we need everyone’s support and help for more awareness, raise funds and volunteers. We have hundreds of volunteers and volunteers board of directors to help and support our group. Along with that we have healthcare professionals from Medical and Scientific Advisory Board (MSAB) and American Association of Rheumatologist (AAR) to stands for the wide range of specialties involved in Sjogren’s diagnose treatment and research.

Punit Dave

Chief Executive Officer

Jane Adam

Vice President of Field Services

Steve Aaron

Vice President of Development

Pedro Diaz

Vice President of Research

Eden Carter

Marketing Director

John Cecil

Director of Development

Jay Dougles

Direcor of Professional Awareness

Kevin Duren

Project Coordinator

Chairperson

Denise Faustian, MD, PhD University of Houston Houston, TX Immediate Past Chair

Elaine Alexander, MD, PhD University of Austin Austin, TX

 

Rheumatology

Steven E. Carson, MD Texas A&M College, TX

Theresa Lawrence Ford, MD North Georgia Rheumatology Group, PC Lawrenceville, GA Ann Parke, MD University of Houston Health Science Center Houston, TX

Daniel Small, MD Sarasota Arthritis Center Director of the Sjögren’s Center of Florida Sarasota, FL Neil Stahl, MD Georgetown University, Washington DC Arthritis & Rheumatic Disease Associates, PC, Burke, VA

 

Orel Medicine

Troy E. Daniels, DDS, MS University of California San Francisco School of Dentistry San Francisco, CA Philip C. Fox, DDS Carolinas Medical Center Charlotte, NC Athena Papas, DMD, PhD University of Austin Texas Austin, TX Andres Pinto, DMD Texas A&M University College, TX Nelson Rhodus, DMD University of Minnesota Minneapolis, MN

 

Nutrition

Joseph Mardigan, MS, MPH, RD University of Houston Houston, TX

 

Associate Members

Arthur Grayzel, MD Roland Jonsson, DMD, PhD Stuart S. Kassan, MD Robert Lebovics, MD Michael Lemp, MD Xavier Mariette, MD Haralampos M. Moutsopoulos, MD Manuel Ramos Casals, MD, PhD James J. Sciubba, DMD, PhD Harry Spiera, MD Leo Sreebny, DDS, MS, PhD Norman Talal, MD

 

BUDGET

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CONCLUSION

It is a proud moment for us that, we are premier organization in Sjogren research and support group funding. However more funding is needed as more talented researchers are taking interest in Sjogren. Our support group’s goal is to finding an additional funding to support these groundbreaking projects. Without increase support from research we cannot fund this projects and thus thing must be turn away. Our hope is one day all Sjogrens research and support group adequately funded so patients can have the answers for their disease. Being a Sjogren’s patient is challenging, but neither having a therapy to treat your disease nor understating what causing it is heartbreaking.

 

REFERENCES

Autoimmune Disease Coordinating Committee. (n.d.).. Retrieved April 25, 2014, from http://autoimmune.pathology.jhmi.edu/adrp.pdf

American Collage of Rheumatology. (n.d.).. Retrieved April 30, 2014, from http://www.rheumatology.org/

Grant Writing. (n.d.).Sample Budget and Narrative -. Retrieved May 1, 2014, from http://www.netplaces.com/grant-writing/developing-a-budget-and-budget-narrative/sample-budget-and-narrative.htm

Sjögren’s Syndrome Foundation – Scientific Initiatives. (n.d.).Sjögren’s Syndrome Foundation – Scientific Initiatives. Retrieved April 28, 2014, from http://www.Sjogrens.org/home/research-programs/scientific-initiatives

Sjogren’s syndrome. (n.d.).Definition. Retrieved May 1, 2014, from http://www.mayoclinic.org/diseases-conditions/Sjogrens-syndrome/basics/definition/con-20020275

When an Autoimmune Disorder Forces You to Alter Your Life Plans – Autoimmune Disorders Center – Everyday Health. (n.d.).EverydayHealth.com. Retrieved April 28, 2014, from http://www.everydayhealth.com/autoimmune-disorders/when-an-autoimmune-disorder-alters-your-life-plans.aspx

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