We 🤟 our vOLUNTEER-Team!

What sparked your v-ATPase Alliance connection?

JS: I had the pleasure of working with Luis Oliveira at The Michael J. Fox Foundation, where he shared his family’s powerful journey to find answers about the symptoms their son Dani was experiencing. I was totally wowed by what Luis, Ana Rita, Kristin, and the v-ATPase Alliance accomplished in just their first year—uniting families, engaging scientists, and laying the groundwork for therapeutic development.

The impact of the Alliance was clear and deeply moving. I felt inspired to contribute in the ways I know best, to help support this incredible momentum on behalf of the v-ATPase kids and families.

Why do you volunteer? 

JS: I volunteer because it feels good to contribute my time to something that makes a real difference in someone else’s life. Knowing that even small efforts can have a positive impact is incredibly rewarding.  

What hobbies do you enjoy outside of volunteering? 

JS: I love spending time outside -- gardening and hiking with my husband and kiddos.

What is your favorite way to start the day? 

JS: With a run outside

What are you reading, listening to or watching these days that you’d recommend to others? 

JS: I just finished reading Nature’s Best Hope for those interested in conservation efforts you can do right at home. I just finished watching the latest season of White Lotus and enjoyed it!

Finally, Fun Fact Time! Tell us something surprising about yourself.

JS:I'm such a paparazzi with my kids!

What sparked your v-ATPase Alliance connection?

OD: I have worked with Luis Oliveira at the Michael J. Fox Foundation for the last five years. After hearing about his son’s diagnosis with v-ATPase and all the incredible work the v-ATPase Alliance is doing, I was inspired. Working full time in neuroscience research operations, I also knew I had a special skill set that could positively impact the work of The Alliance. I reached out to Luis to offer my support of their strategic scientific agenda, and I am so glad I did. The v-ATPase Alliance is a small organization with a big impact on the children and families living with v-ATPase today, and it is incredibly rewarding to be able to work with them on their mission.

Why do you volunteer? 

OD: Volunteering allows me to apply my skills in a purposeful way. Even when working behind the scenes, I know that my contributions support meaningful progress and provide hope to families facing incredibly challenging circumstances.

What hobbies do you enjoy outside of volunteering? 

OD:  Outside of volunteering I love painting, walking in Central Park, and trying the newest restaurant in town!

What is your favorite way to start the day? 

OD: With a pilates class and blasting my favorite song of the week!

What are you reading, listening to or watching these days that you’d recommend to others? 

OD: I am a huge film buff, some recent favorites are The Substance, The Last Show Girl, and Past Lives.

Finally, Fun Fact Time! Tell us something surprising about yourself. 

OD: I love to travel and so far have been to 41 states and 34 countries. I recently took a 10 day solo backpacking trip through Norway. It was absolutely amazing and I am already planning my next solo adventure, in the Faroe Islands!

EB: I discovered the v-ATPase Alliance through RD-Portugal, a Portuguese rare disease association. After learning about Dani’s story, I felt a deep urge to get involved. I realized there are many more children like Dani who need our support, and I wanted to be part of that effort.

Volunteering gives me a profound sense of fulfillment. Even the smallest contributions can bring hope, and knowing I can be part of that is incredibly meaningful. It’s an amazing feeling to belong to a community dedicated to making a difference.

Outside of volunteering, I’m a nature enthusiast. I love spending time outdoors, whether it's in the countryside, by the sea, or caring for my bonsais. I enjoy surfing, meditating in nature, and taking long beach walks with my dogs. 

One of my favorite ways to start the day is with a quiet seaside walk. The sound of the waves and the ocean breeze help me feel centered and grateful, setting the tone for a calm and focused day.

Lately, I’ve also been immersing myself in music. I’m a big fan of hard rock classics like Scorpions, Bon Jovi, D-A-D, Van Halen, and Dire Straits. Recently, I discovered Tash Sultana, an incredibly soulful artist whose music brings me peace and inspiration. If you’re looking for something both energizing and soothing, I highly recommend giving her a listen!

Fun fact: I love to sing! Music is one of my favorite ways to connect with others and express myself.