View Full Version : Lupus Connections International - Survey and Lobby

11-15-2003, 07:43 PM
I received this e-mail and it looks ok to post.

Dear Lupus Advocate,

I am Joanne Hageman VP of Lupus Connections International. Our organization has been asked to lead the panel discussion on Lupus treatment, and the Lupus patient's ability to work at the upcoming conference for Social Security Administration Deputy Commissioner Martin Gerry in December in Philadelphia. If you will not be in attendance at this conference, as a panelist, I would like to insure that as patients of Lupus, that your thoughts are heard. You strike me as someone who is proactive about their care, and taking the initiative for change in the current system that does not provide fair assessment and evaluation for disability and Lupus.

Lupus Connections International is a 501 3c non-profit organization seeking to unify the voice of Lupus until a cure is found by empowering the patient with tools to educate, self-direct and manage their own wellness and health care regimes. As patients with Lupus, and a patient directed organization we know your plight. We need your financial support in order to share your voices, develop our educational and wellness materials and create more public awareness events. Some proceeds of our fundraising efforts will go directly into the hands of the research organizations that are dedicated to finding a cure.

Our organization wrote a letter to the Social Security Administration in response to their request for comment regarding the immune system evaluation and we want to reach out to as many Lupus patients as we can as we build our proposal to present to the SSA. Because we want a precise demonstration of the facts we are presenting, we have designed a simple, anonymous questionnaire to accompany our existing data to drive the points home. Would you share your voice to help us?

Please send all responses to lupusconnections@lupus.every1.net

I look forward to hearing from you soon.

Joanne Hageman
Lupus Connections International
One World~One Voice~One Cure

The following questionnaire will be collected and analyzed for the expressed use of LCI for the Social Security Administration conference. All responses are personal and confidential and your contact information will not be used for any other intent. Please share this questionnaire with all those who wish their voice to be heard on this critical issue.


1.When and where were you located in the US at the onset of your Lupus?

2.Did you have family members with any of the over 100 AARDA recognized autoimmune diseases? http://www.aarda.org/patient_information.php

3.Where you exposed to the Epstein-Barr virus? (Mononucleosis).

4.Type of environment you lived in before the disease of Lupus?

5.What type of Lupus do you have?

6.Has your Lupus been diagnosed by a Rheumatologist?

7.How long have you had Lupus?

8.To what degree has your Lupus progressed?

9.What method of treatment works in managing your Lupus?

10.What drugs do you take to manage your Lupus?

11.What is your cost of those drugs? (co-pay) (self-pay)

12.Are you insured? If you are not insured, why not?

13.Are you disabled by your Lupus?

14.Are you Male or Female?

* If Lupus disables you, we know what you must have gone through to receive your benefits. So please help us with the following questions.

15.If your Lupus is disabling, are you currently receiving SSI or SSDI?

16.Would you return to work if you could?

17.Could you or would you work the same type of job?

18.Have you received your Ticket to Work by the Social Security Administration?

19.Have you used that opportunity or investigated its possibilities?

20. If you could work part time, with SSA support, what type of work could you do?

21. What changes would you like to see in the Social Security Disability Insurance process?

22. How often has your disability or able-ness changed, and can you predict how able or disabled you could be from day to day or week to week?

Please send all responses to lupusconnections@lupus.every1.net

Thank you for your participation in this questionnaire.

Lupus Connections International
80 West University St
Alfred, NY 14802

Lupus Connections International
One Voice~~~One Cure


11-15-2003, 10:28 PM
Thank You most beloved administrator :lol:

I did complete and submit the survey.
We have always been denied social security and/or disability due to LUPUS! It is very unfair and in need of change and a voice!


11-16-2003, 03:20 AM
I'll make this a "sticky" so people will see it. When it's over just "unsticky" it.