IgG4ward

What do navigating a rare disease like IgG4-RD and gravel bike riding have in common? "They're hard! There are so many unexpected twists and turns," shares Jack Bailey, a Rare Disease Dad and the founder of Vermont Rare. Jack organized the Vermont Rare Gravel Ride, where IgG4ward!'s Katharine M. Provencher, MSW and her husband Andy, who lives with IgG4-RD, participated to raise awareness and funds for the rare disease community. This event, inspired by Jack’s own journey, shows that even on the toughest roads, we never ride alone. Learn more about their experience and the importance of raising awareness for rare disease here: #raredisease #IgG4RD #IgG4relateddisease

IgG4-RD affects so much more than just your physical health, as we discussed in our most recent Caregiver Conversation.    If you missed the conversation, which featured a thoughtful and diverse group of individuals who shared their experiences of navigating this disease and their mental health, we encourage you to watch the webinar here: #IgG4RD #IgG4relateddisease #raredisease

The IgG4ward! Foundation is delighted to welcome Mr. Brian Travers, MBA, to its Board of Directors. Mr. Travers, a Creighton University graduate (BA ’89; MBA ’21), has partnered with his brother over the past three decades to build two highly successful, retail-centric businesses: Premium Retail Services and Volt Systems. The former was acquired by the Acosta Group in 2021, and the latter by Walmart in 2022. Brian brings to his role not only a keen business sense but also a vigorous energy; a collaborative spirit (Put me in, Coach!); and a powerful desire to help disseminate knowledge about IgG4-RD across the world.

Will you be attending the upcoming IgG4ward! JAM? If so, we would greatly appreciate if you could take a few minutes to fill out the following survey: https://shorturl.at/b5yAl Your feedback is invaluable as we work to finalize the details of this important event! #IgG4wardJAM #IgG4RD #IgG4relateddisease

“Does IgG4-RD occur in children and, if so, is it different from the disease seen in adults?” Professor Omer Karadag from Haceteppe University in Ankara, Turkey responds in this week's "Good Question" below. #IgG4RD #IgG4relateddisease #raredisease

Please join IgG4ward! Director of Patient Advocacy, Katharine M. Provencher, MSWfrom 9 – 10:30 A.M. EST this Friday, October 18, for a conversation on mental health featuring Kim, Damon, Andy, and Sabrina, who all live with IgG4-RD. This diverse group will share their personal stories and experiences living with the disease, speaking to: - How their mental health was affected by the diagnosis - The challenges they faced - Coping strategies Please register to attend the conversation here: https://lnkd.in/e6rxxECw #IgG4RD #IgG4relateddisease #raredisease

Cory Perugino previews his talk at The JAM, indicating why the road to IgG4-RD runs through B cells and understanding the seemingly paradoxical relationship these cells have with IgG4. His talk will certainly be one of many highlights of The JAM. #IgG4RD #IgG4ward #IgG4wardJAM #rarediseases #autoimmunediseases

You may be familiar with the term "B-cell depletion" but how much do you really know about B-cells? Dr. Cory Perugino, who will be speaking about B-cells in relation to IgG4-RD at the upcoming JAM, shares a brief preview of what you can look forward to learning from him during his presentation titled, "Our Treatments Are Now Grounded in Science: Why Are B Cells Important in IgG4-RD?" #IgG4RD #IgG4wardJAM #IgG4relateddisease

“I have enlarged lacrimal glands. A biopsy was done on a lesion from one of the glands showing IgG:IgG4 ratio ~100% and 236 IgG4 blood level. I haven’t been officially diagnosed with IgG4-RD. I am lucky that I am only dealing with fatigue, difficulty falling asleep, puffy eyes, and arm pain now and again.  What can happen if I refuse the prednisone?”  Check out Dr. John Stone's response to this week's "Good Question" here: #IgG4RD #IgG4relateddisease

Please join IgG4ward! Director of Patient Advocacy, Katharine M. Provencher, MSW, from 9 – 10:30 A.M. EST on Friday, October 18, for a conversation on mental health featuring Kim, Damon, Andy, and Sabrina, who all live with IgG4-RD. Katharine will host a discussion featuring these four diverse individuals who will share their personal stories and experiences living with the disease, speaking to: - How their mental health was affected by the diagnosis - The challenges they faced - Coping strategies Please register to attend the conversation and submit any questions you have regarding the topic here: https://lnkd.in/e6rxxECw We will try to answer as many of your questions as possible during our conversation. #IgG4relateddisease #IgG4RD #mentalhealthawareness