When a 13-Year-Old Takes on The Fight for a Cure!

In anticipation of his bar mitzvah last November, Elliott Weiss hosted a biking event called, Double Chai 4 a Cure, to raise awareness of — and fundraise for — the APBD Research Foundation’s work on behalf of people suffering with APBD. Working together with his family, friends, and classmates, Elliott raised over $22,000 to support the cause that is near to his heart.

We took some time to speak with Elliott and here’s his story:
How did you pick the Double Chai 4 a Cure bike event and fundraiser for your bar mitzvah?

I told my parents that I was thinking about organizing a fundraiser for APBD research for my mitzvah project. This disease affects so many of my family members, including my grandfather, Zeidy Michael. I thought about competing in an organized triathlon but because of the pandemic, all organized events were cancelled. So, we started to explore other creative ways to fundraise. I knew I wanted to incorporate a fun activity and personalize the fundraiser.

We came up with the idea to bike through NYC’s famous Central Park. The bike loop in Central Park is about 6 miles, so 6 loops is 36 miles.  That seemed like the right number for us, since it would be a challenge, but something we could do.  Thirty-six is also a special number because it is “double chai.”  In Hebrew, “chai” represents the number 18 and also means “life.”  It’s lucky to do things in multiples of chai.  That’s why we called it “Double Chai 4 a Cure.”

My family enjoys cycling all over NYC. We can ride for hours and have fun with it. But we didn’t train specifically for this event. We were planning to have the bicycling event on October 11, which turned out to be Simchat Torah, a Jewish holiday. So, we moved it to October 18, which worked out even better. We were doing double chai (36) on chai (October 18^th)!

What did you do to prepare for this event?

The first thing I did was set up a website for the fundraiser.  I developed my mom’s company’s website last year, so I had some experience. On the website, www.doublechai4acure.com, I provided information about the disease and the work that ABBDRF is doing to fight it. I then connected it to the GoFundMe website, where our friends and family could easily make donations. We were always checking the site to see how the fundraiser was progressing.

I sent emails to my friends at school as well as family members and friends to let them know about my bar mitzvah project and to ask for their support. I was amazed to see how much they cared to ask questions about APBD and to make generous contributions to the fundraiser.

Tell us about the bicycling event through Central Park. How did you celebrate?

Bicycling through Central Park once or twice is easy. But going around it several times to complete 36 miles was challenging. What made it easier was having friends join us for a lap or two.  We ordered t-shirts with the words “Double Chai 4 a Cure!” on them, which were a hit among our friends!

We had carried energy bars and water to sustain us during the ride. As we rode through the Park, we stopped every so often to eat and drink and rest for a couple of minutes.

When we completed the ride in about 3 hours, our good friends were even cheering us on with cowbells at the finish line to celebrate our victory. I remember how my legs felt — heavy and wobbly, like Jell-O. We had milkshakes and French fries immediately after; a few hours later, we had ramen for dinner.

When was your Bar Mitzvah? How did you celebrate?

It was on Thursday, November 12^th.  Because of the pandemic, it was much different than we had originally planned.  We had family members gather on the rooftop of our synagogue, KJ, in Manhattan.  I read from the Torah, which I was preparing for all year.  The best part was being lifted up in a chair while everyone cheered for me.  The other fun part (but also scary) was being pelted with my cousins by candy.  It’s a Jewish tradition to throw candy at a bar mitzvah boy.  I think they had a little too much fun throwing it as hard as they could.  Thankfully it was soft candy.  Even though it was a different bar mitzvah than we had planned, it felt even more special because of everything going on with the pandemic.

Have you done something like this before?

This event was my first fundraiser. We had set a goal of $18,000. With the help of my parents, I shared my mitzvah project goals with my classmates, our family, and friends. Our friends were sharing this event with their friends and friends of friends… It blew my mind to see how much people supported me.  I still can’t believe we raised over $22,000!

Would you suggest other kids do something similar?

Yes…

After the event and my bar mitzvah I was invited to share my experience with the students in my school who will be having their bar/bat mitzvahs next year. Their parents were there too. A lot of people told me it was inspiring to hear how a kid my age can make such a big impact. It was also amazing to get the word out about APBD. I hope I have more of these opportunities!

You created this fundraiser because your grandfather has APBD.  What are some things you like to do with him? 

Before COVID, I used to love going to my grandfather’s house in Brooklyn for family meals. We always have delicious food and my grandfather especially loves feeding us fruit. We always have great conversations and I love hearing about his life back in the Ukraine. Since COVID started, we have been seeing him only outside—we bring chairs to his front yard and still have a good time. My grandfather used to live down the block from his two brothers, Emil, and Gregory, in Brooklyn. So, visiting him and my grandmother also meant seeing a lot of my cousins. I am very close to all of them. Since I am the oldest grandchild on my grandfather’s side, I hope that my fundraiser will inspire my cousins (Emil and Gregory’s grandchildren) to also get involved with the APBD Research Foundation when it’s time to prepare for their own bar and bat mitzvahs!