ACP is committed to accelerating research to cure MS and to enable people affected by the disease to live their best lives. Volunteers help us in our mission in a variety of ways. Kaustubh Pandav (“Stubhy”) is the lead singer of Lucky Boys Confusion, an American rock band from Chicago. He and his colleagues in the music industry recently donated their time and talents to raise funds to enable the work that we do through the MS Sucks: Singing for a Cure concert. Read more about Stubhy’s MS journey and the success of this sold-out event!
Music plays a big role in Stubhy’s life, it is one of his greatest passions. In his words, “I was a poet before I realized I had a gift for melody. It’s my release, it’s my outlet, it’s my go-to when everything else is failing.” At the end of 2015, Stubhy noticed he was having difficulty walking, his leg started dragging and hitching. He underwent extensive testing and tried a number of remedies over the next two years, including chiropractors, massage and physical therapy, to no avail.
Eventually, Stubhy’s neurologist ordered an MRI which showed lesions in his brain and spinal cord. On Black Friday 2018, Stubhy was diagnosed with MS. His neurologist prescribed Ocrevus, but Stubhy’s insurance company declined coverage, wanting him to try other disease modifying therapies that are less expensive. He immediately went into action, looking for other solutions and was eventually approved for Ocrevus treatment through the Genentech Foundation. He shares, “I didn’t have the chance to be sad because I had to get going. I had to work at getting myself better, my wife was three months pregnant. Too many people in my situation with the insurance company would have folded their arms and said, ‘OK, this is the hand I’ve been dealt.’ There are other resources out there. There are other ways to do it. You just have to fight because nobody else is going to fight for you if you don’t fight for yourself…Luckily everything worked out, as much as it works out when you have MS. I’m very fortunate and have had great results.”
After doing extensive research into possible beneficiaries, Stubhy decided to give the proceeds of the concert to ACP. In his words, ““I wanted a charity that is focused on research and cures… ACP is a patient-founded organization fully focused on raising funds for a cure.”
Stubhy wanted to give back to the MS community. In December 2019, he organized the first MS Sucks: Singing for a Cure charity concert, raising over $30,000 for MS research. He shares, “It makes getting through this a little bit better knowing that you’re doing something that does some good for people. My dad was a real big philanthropist in his own right. He was really big into charity and donations, giving of his time more than anything else. I think I just picked up on that growing up, I just didn’t have a cause until now.”
The pandemic delayed plans for an annual concert, but round two was worth the wait! MS Sucks 2023 was held on Saturday, March 11th at the Bottom Lounge in Chicago. Over 700 people enjoyed this sold-out show featuring performances by Lucky Boys Confusion, The Waiting Game, Josh Caterer from the Smoking Popes, Tom Higgenson from the Plain White T’s and Art Alexakis from Everclear.
This year’s concert raised another impressive total of over $43,000. For Stubhy, it was successful in other ways, too. He states, “Music is the background of the event. It’s more about people coming together to raise awareness and raise some money for a cure… People came up to me and said they were at the show because what I brought up made them realize they probably had something going on, too. I got a couple of people to go to neurologists. Nothing makes me feel happier than that, early detection is important. We raise thousands of dollars and sell hundreds of tickets, but the thing that makes me the proudest and makes me choke up a little bit is making a difference in people’s lives.”
The concert featured a raffle that raised over $7,300. Raffle prizes included two electric guitars (one of which was signed by every performing artist at the concert), signed Dee Snider and Coolio posters, a School of Rock gift certificate, and merchandise from Lucky Boys Confusion, The Hoodie Life and Mutant League Records. In addition, MS Sucks t-shirts and sweatshirts were available for purchase during the show. All proceeds will support ACP’s work to accelerate MS research to improve the health, healthcare, and quality of life for those affected by the disease.
The concert reached the hearts of many people in the MS community. Those in attendance felt the love and support that was the spirit of the event. According to Lindsey Santiago, Development Associate at ACP, “It was an amazing show, from the acts, to the people attending, to the entire MS Sucks team. Seeing how many people came out to support an amazing cause, Stubhy and Art’s performances were incredible, also meeting new people and talking to them backstage about MS.”
The MS Sucks concert had a tremendous amount of support behind the scenes. Alex Zarek and Jennifer Kurz served as photographers throughout the event. Alex was also the chief graphic designer behind the MS Sucks merchandise. The concert was a resounding success thanks to the efforts of many other volunteers, including Sam McHale, Jenna Michals, Elijah Nelson and Dan Volz. We’d also like to thank Bristol Myers Squibb, MedRythms and the School of Rock for their generosity as sponsors, the Bottom Lounge for providing the venue for the event, James VanOsdol (JVO) for hosting the show and Mer Mansuria for providing a full lunch backstage for the crew.
We are grateful to all who helped make the concert as powerful as it was, both named and unnamed.
Funds raised from events like these help us to continue our work to improve diagnosis, optimize treatment, and find a cure for MS. If you missed MS Sucks: Singing for a Cure 2023 and would like to make a donation, it’s not too late! If you have a favorite activity that friends and family members enjoy doing or talents you would like to share, hosting a fundraiser is a great way to reach out to your community, raise funds for ACP and have fun while doing it. For more information on hosting your own fundraiser, contact Lindsey Santiago at lsantiago@acceleratedcure.org or (781) 487-0013.
