Statement of Intent
MCTD.org is a non-profit, online gathering place, for those living with MCTD, their friends, families, support systems and medical providers.
We strive to present the most current information available on the overlap diseases that comprise MCTD, as well as the available treatment options.
We sell merchandise as a fundraising mechanism to ensure the future of the site, as well as the foundation of a supporting 501c3. Our goals include providing support services to needy patients with MCTD, in addition to those mentioned below.
We provide forums for those afflicted, as well as blog formatted personal stories of those who care to share their personal journey with the disease. Only when we can share symptoms and histories can we start to identify commonalities. As appropriate, photographs of symptoms will also be filed.
An important aspect to be covered on the website is the impact of the Autoimmune Protocol Paleo diet, an eating plan that has modified the disease process for many patients.
MCTD.org hopes to work with clinical trial providers as new advances are made in disease process research. By collecting patient’s stories we hope to work towards identifying causative factors.
Our goal is broad as the need is great. We know many patients feel utterly alone and are frequently treated as if they have psychological issues, rather than an identifiable disease process. This needs to be changed.
This is so amazing. I’m so happy you are starting this to help others including myself.
Where does the money you raise go? Is there a group of researchers that you donate it to? How does donation help the community?
The only donation we’ve made was to NORD – the National Organization of Rare Diseases..it was the choice of the woman who spearheaded the awareness walk we did last year. At this point we are using the money for the website upkeep and managing financials. We have no paid employees..it is managed by patient volunteers. As we grow, that might change.
The board is assessing direction for the foundation. Currently under discussion is creating an outreach group in each state…as funds are needed for that research and expansion, they will come from donations.
Hello. Is this foundation still active?
Yes, very much so. Our website is in the midst of much needed refresh, and we are very much alive and active. We’ve recently added two new people to the board and have new energy and ideas.