Frequently asked questions about the eds petition

If this is a petition, why do I need to pay $10 in addition to offering my signature?

Our investors are on the businesspeople on the boards of top pharma companies, with vested financial interests in this project. Our investors stipulated that each signature must be accompanied by a $10 contribution to show that the people signing our petition are serious about this cause, and that our investors' investment of millions of dollars will not be wasted on something there is no true demand for.

Can I sign multiple times for multiple people in my family?

Yes, but each $10 donation MUST BE MADE SEPARATELY to count as a separate entry on the petition. You may use the same credit card twice (or three times or more) for multiple family members, but, again, you must make each donation separately.

What will the research scientists be working on?

The goal of the research will be to develop the science that pharmaceutical companies need to develop more effective treatments and eventually a cure.  To that end, there are a number of projects that could be launched. At this point, it is too early to say specifically, but we do know that EDS Hypermobile (Type 3) is the most common type of EDS and the gene(s) responsible for cause this type of EDS has yet to be identified.  We feel it is important to focus on research that will bring us closer to identifying all of the genes responsible for causing all types of EDS.

We also hope to learn more about the role and development of collagen in the body.  Very little is known about how our bodies select which collagen to use in order to build our connective tissue.  We believe more research in this area could lead to treatments that could “trick” our bodies into selecting healthy, rather than defective, collagen to form our connective tissues. 

Where will the Center be located?

We are looking at several possible locations now.  So, nothing is definite yet, however, it is very likely the Center will be in North or Central Jersey.  It is our goal to locate the Center in an area that will be accessible to as many patients as possible. 

I thought EDSers United was a support group? Why are you now raising money for a medical and research center?

EDSers United is an incorporated non-profit public charity that was founded in 2010.  We are composed of patients, caregivers and health care professionals.  When we started, our mission was to raise awareness of EDS and provide community support to those affected by it.  We are located in New Jersey, and at the time, there was not a lot of community support available, so we started EDSers United to fill that void. 

But now, in 2016, there are several other established non-profits (both private and public) that are effectively spreading the word about EDS and hosting community outreach and educational programs and conferences.  We feel the time is right to shift our focus.  Therefore, we are in a transition process.  The primary goal of EDSers United will now be the creation of the Treatment and Research Center for Rare Genetic Conditions.

Will you still be involved in community outreach and support? 

Yes.  We will continue our monthly community outreach program (see our home page for information).  We understand how important it is for programs such as awareness efforts, community outreach, educational programs, and conferences to continue.  We work with and support organizations established around the world dedicated to the EDS cause, who do an excellent job at those programs.  Because the new Center will specialize in Ehlers-Danlos Syndrome and other related connective tissue disorders, we will do everything in our power to encourage the continuation of these efforts and programs through collaborations with and grants to other organizations focused on these efforts.

As we become more specifically focused on research and clinical science, we hope to support more research on other genetic disorders (not just EDS).  As that happens, we will support awareness and community outreach programs for those diseases through collaborations with other nonprofit organizations and the distribution of grants so that these campaigns and support efforts can continue to grow. 

Are you affiliated with EDNF or the ED Society?
We do not have a formal relationship with the leaders of these nonprofit organizations but we are supportive of their efforts and attend their meetings and conferences. 

How will you encourage health care professionals to become EDS experts?
We have already developed a strong network of EDS health care professionals and scientists, and we will continue to develop that network.  One of our goals is to develop a grant program to provide scholarships to pre-med students, contingent upon their acceptance and attendance to the medical school of their choice, with the requirement that they specialize in treating and/or researching EDS and other rare genetic conditions.  This will help assure young professionals will be knowledgeable and available to treat patients with rare genetic conditions.