Terry McCall attended her first CJD Foundation Family Conference in 2024. We interviewed her to learn more about why she wanted to attend and what she took away from her experience. Read our Q&A with her!
Q: What made you decide to attend the Family Conference this year?
A: I had participated in the bereavement group last year with Amy Dreweatt, Family Services Program Manager, CJD Foundation, and co-led the May series and really wanted to meet her in person. After hearing about the conference, I realized I wanted to learn as much as I can about CJD and also learn how else I can help work towards a cure. My goals for attending were to connect with people and learn more from the experts. They were definitely met! I really just wanted to experience what conference was about.
Q: Could you describe your experience at the conference?
A: I found the moving roundtables with research experts so valuable! It was amazing to have such close access and get specific questions answered. It really felt like we are all on the same team—working together to find a treatment or cure.
I attended the Sporadic CJD Workshop, CJD Overview sessions and the Bereavement Workshop on Friday which were really helpful summaries. These gave attendees some common ground even though everyone is in different stages with the disease.
I also really valued the memorial service, although it was emotional.
Q: Did you make any meaningful connections at the conference?
A: Being at tables with different people during the reception and banquet was great. I was also excited to connect in person with people I had met over Zoom in virtual programs the past year. Sometimes when you come to events as a newcomer it’s hard to break through, but I didn’t feel that at all. Overall the experience was very welcoming!
Q: What were your key takeaways?
A: Three things were reinforced for me:
- We in the prion disease community are so fortunate to have this community. No we never wanted to be here but because CJD is so rare and the CJD Foundation exists, it gives us a more tight knit support system.
- The CJD Foundation does so much -- from 1-on-1 support to research—I learned more about all of the different initiatives going on.
- It made me more dedicated. I was already was involved with the CJD Foundation—I helped with the Bereavement Groups, and already made plans to go to the Denver Strides for CJD. It made me want to get even more involved!
Q: You also attended the Advocacy Day – how was that experience?
A: I didn’t think I would be able to be an advocate but I did it! I dropped off literature with two Senators and both personally called me back. I also walked into one office without an appointment and was able to meet with a representative and tell my story.
Q: What advice would you give to someone considering attending the conference for the first time next year?
A: Go if you possibly can. See who you can connect with. Expect to learn things. Expect to make good connections.
Even though it was emotional at times, I enjoyed being there and was so glad to have gone. I was impressed with how much coordination and work had gone into all of the sessions. It was a great learning experience!