Still’s Conference Highlights

Our 10th Anniversary Still’s Disease Conference was held in Biloxi, Mississippi on September 1st.

We met on Sunday evening for our Meet and Greet in one of the hotel lounges. The group was small this year but that didn’t damper the enthusiasm of meeting. As it turned out, the attendees told us they were grateful it was such an intimate conference because they felt they had more individual attention, and it was less tiring.

The conference started as usual with drinks and pastries then checking in at the registration table to get dragon pins and share our addresses, etc.

I was introduced as the speaker by our treasurer/secretary Bob Himes. Instead of standing at a podium I felt more comfortable sitting in front of and with everyone to share my story from diagnosis through the years. Much of my presentation talked about forms of therapy I had been prescribed from the beginning days of my first hospitalization onward, things I have learned to help me cope and manage my disease and ways that I overcame depression and grief that revisited me through the years. I shared how I try to battle my Still’s with an attitude of “Quiet, Calm, Peaceful, Determination.” Next I spoke about the International Still’s Disease Foundation. The history of the support groups starting with the first group of people that found each other online, next the Yahoo group, the Facebook group, the Still’s website discussion board, the weekly Chat hour and our Twitter page, Stills and News.  It was shared that through the years the foundation has partnered with Needy Meds (Medication & Assistance programs @ needymeds.org), Genetic Alliance (Registry of 1,000’s of diseases @ diseaseinfosearch.org), Reg4All (Sharing Health info with researchers & doc. @ reg4all.org), the International Foundation for Autoimmune Arthritis. World Autoimmune Arthritis Day (World wide online event)  and the current Patient Centered Study (Early onset symptoms of 5 autoimmune diseases @ ifautoimmunearthritis.org)  and recently a presentation to SOBI (worldwide bio-pharmaceutical company. The distributor of Kineret @ SOBI.com). The last part of my presentation discussed current research being done for autoimmune diseases and future projects the foundation hopes to implement.

After lunch we had the auction of our conference dragon. It is a different dragon each year with an engraved plaque. It is auctioned with all proceeds going to operating expenses of the foundation. Next Carole Himes was presented with a crystal stone that sits atop a lit base that will be adorned with a plaque to read:

Mom
Lives touched Love shared
We Thank You
Your Still’s Family
2014

This gift was presented in appreciation for all her years of love and support to everyone’s lives she has touched. We next held our gifts for donations drawing. During the days breaks we answered questions and visited. We closed earlier in the afternoon giving us a bit more of a rest before dinner.

We joined for dinner at the Italian restaurant, Costa Cacina, and it was so very good! We talked through and after dinner and hated to say farewell.

Meeting new family members; which is how I think of each, is wonderful and it always saddens me to leave. It takes a few days to recover but with new found relationships I have hopes that we shall meet again soon or at least at the next conference.

Thank you all that were able to join us.

We are beginning to plan the next conference so please visit often for updates.

Patricia L. Boerner, aka Melly

MEDICATION
&
ASSISTANCE PROGRAMS

4 PART VIDEO SERIES
ON
STILL'S DISEASE

History - Manifestations
Diagnoses - Management

Presented By
Dr. John J. Cush


ENTER HERE