Boston Rare Disease Parent Meet-up
Activity

Boston Caregiver Lifestyle Meet-up

Just before the annual 4th of July fireworks went off in the Boston harbor, parents from the rare disease group known as AADC Deficiency met to discuss strategies we learned during our Caregiver Lifestyle series. It was also an opportunity for us to be parents, share stories, and relax together.

Our final online event in the series was held in June 2023. July was then our first parent meet-up happening, and America was the first location chosen. Boston’s history and role in founding the USA was the perfect location to celebrate in July.

Boston is also the location where the potential of gene therapy for AADC Deficiency is being researched. A Study of SmartFlow Magnetic Resonance (MR) Compatible Ventricular Cannula for Administering Eladocagene Exuparvovec (Upstaza) for pediatric participants was studied at Boston Children’s Hospital.

Planning

The first step is planning the logistics of organizing for families who are scattered around the world. Rare diseases like AADC deficiency mean that there are not many in one area. So, we planned to host several events.

The first event would be Boston, followed by Taiwan and Bangkok. Thankfully, the Courtyard Boston Downtown provided wonderful rooms and a meeting hall for us to host our event. The hotel was strategically located downtown near all the sights and sounds of Boston, so families could get a chance to vacation as well. 

Boston Meet Up

AADC Deficiency Caregiver Meet Up in Boston, USA July 2023
meetup event

Caregiver Lifestyle Series

For 6 months, we hosted a monthly caregiver lifestyle webinar. At each event, we invited a different health specialist to discuss ways parents can embed therapy practices at home. Online events allow for a large gatherings from around the world, but we always appreciate being able to meet parents and hold children.

Mission

Educational support for families of rare diseases, undiagnosed diseases, and special needs.

Community

Creating awareness about rare diseases and improving early diagnosis.

Physical therapy

Once all the families arrived in Boston, we had a short meetup to eat and catch up with each other. It is a wonderful feeling to be able to connect with another parent who understands the unique struggles of a rare disease caregiver. Once our meals were done, kids got straight to work.

The first session was a whole group educational workshop. The session was led in conjunction with Yuji Oka, the founder of Adapted Spiral Apraxia. This first session helped to demonstrate some of the strategies we discussed in our online Caregiver Lifestyle Series workshops.

Once the large group session was done, we broke up into individual sessions. Yuji provided 1-hour one-on-one sessions with families. Children received personalized instruction and worked to strengthen their muscles and improve their balance. More importantly, families received specific instructions from Yuji on what to work on at home. We call it homework, and every family should have 3 activities they should work on when they return home.

While one family worked with Yuji, the others had a photo shoot, toured the city, and had lunch. By the end of the weekend, we all had enough lobster rolls to last us a lifetime.

Thank you to our partners and sponsors for making this series possible!

Boston Caregiver Lifestyle Meet Up Video

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