IDF traveled all across the country for patient education meetings on Saturday, September 10. This busy Saturday saw IDF in Chicago, Kansas City, and Seattle to educate the community about primary immunodeficiency diseases and provide networking opportunities for patients and family members. Each meeting featured local experts in immunology addressing the treatment and management of primary immunodeficiency diseases with presentations and question and answer periods.
Experts at the Chicago meeting included Dr. Ramsay Fuleihan, Northwestern University; Dr. William Muller, Children’s Memorial Hospital; Dr. C. Lucy Park, University of Illinois; and Dr. G. Wendell Richmond, Allergy and Asthma Physicians. After the physicians spoke, the patients and family members had a group session where they connected on common issues, strategies for disease management and seeing the positives of life with PIDD.
There was also a program specifically for youth held at the Brookfield Zoo. The children acted out scenes from the book Our Immune System, talked about their lives with PIDD, and did a hand washing activity that taught them the importance of good hygiene in the defense against germs. As part of the youth program, the children were accompanied on a walk around the zoo where they were most excited to see real live zebras!
The meeting in Kansas City was one of the largest patient education meeting in IDF’s history with 80 patients and family members in attendance! Many participants had never before attended an IDF meeting and really enjoyed the opportunity to meet each other and learn from the presenters about treatment and care for PIDD. The physicians presenting included Dr. Christina Ciaccio, University of Missouri; Dr. Chitra Dinakar, University of Missouri; and Dr. Selina Gierer, University of Kansas Medical Center.
Seattle’s meeting, attended by 50 participants, featured the the outstanding team of presenters of Drs. Hans Ochs, Suzanne Skoda-Smith, and Troy Torgerson all of University of Washington & Seattle Children’s Hospital. The patients and family members were so engaged in talking with the physicians, that the doctors agreed to answer medical questions for an hour and half as the attendees wanted more time than the 45 minutes allotted. Some participants were so excited to become connected with IDF that many expressed interest in volunteering. One patient remarked about the event, “Best meeting I’ve ever attended with IDF!”
USIDNet was on hand to consent patients in Chicago and Seattle who wished to be a part of the USIDNet Patient Registry. The Registry is a database designed for the advancement of research for primary immunodeficiency diseases. Its success depends on patients and families who are willing to submit their medical information to be combined with thousands of others in order to establish this valuable data set.
Each meeting was great in its own right and patients walked away feeling more connected to IDF and each other. While pulling off three amazing patient meetings hundreds of miles away from each other may seem like magic, it was really achieved with large thanks to IDF’s wonderful volunteers in each area. Thank you Amy and Shawn Walsh, Kim Laberry, and Zina and Randy Berryhill in Illinois; Ginnie Job, Tommie Cassen, and Jenise Turner in Kansas; and Rachel Korsick in Washington!
Share in the knowledge and connections that IDF Patient Education Meetings offer! Join us at an upcoming meeting or other great IDF event in your area! Check out the IDF Calendar of Events for details.
To learn more about USIDNet and the USIDNet Patient Registry, please visit http://primaryimmune.org/patients-and-families/usidnet-patients
Please let IDF know if you are involved in any Community in Action activities in your community. Comment below or fill out the Contact form at the top of the page to have your story featured in a future blog post. To learn more about ways you can get involved, please visit the website at www.primaryimmune.org .