Oskar's Jam for CureSMA - Sat. June 15th, 2pm -6pm
Dear friends and family,
This year, to support CureSMA, we have decided to change things up a bit and hold our own fundraising event. Please join us IN OUR BACKYARD, for our first annual OSKAR'S JAM FOR CureSMA! Yes, you heard that right! We are going to set up a "stage" on our back deck, with all the necessary musical gear for our friends, colleagues, and neighbors to come jam with each other.
If you are a musician, pro, amateur, or a student, you are invited to take the stage to perform one or two tunes from your own repertoire. If there is time, we will of course jam it out with any willing participants (aka. Oskar), through the afternoon. If you are not a musician, simply sit back and enjoy the music, eat, drink, and move your feet to the beat if you so desire. You can expect to hear some jazz, pop, rock, blues, funk, Klezmer, and we are really hoping to hear some bluegrass, Celtic, world, classical, and singer/songwriter as well on the Stage at 156 Warren Street. We especially encourage your kids to peform, and we might reserve a dedicated Kid Hour for everyone to feel comfortable.
Why do we fundraise for CureSMA? Cure SMA’s mission is to fund breakthroughs in treatment and care, and provide families the support they need for today. By donating to our cause, you will help fund programs that will continue to change the course of SMA for everyone affected - from infants to adults - and eventually lead to a cure.
As most of you know, Oskar is a direct beneficiary of this wonderful organization and the research it has supported over the years, having received the first FDA approved drug to treat SMA through the early days of clinical trials for Spinraza. He continues to receive Spinraza via intrathecal injection into his spinal fluid, every four months, and he continues to do great. Because he has been getting it since age 4, he has been able to maintain his strength, which in our view is pretty much priceless. We watch him enjoy all his activities with such energy and enthusiasm, whether it is playing his drums, J-Sax, melodica, or play chess at tournaments, and we can't help but wonder if all this would be possible without Spinraza and this incredible organization that helped get the research for it off the ground. There is a lot of hope in the SMA community as many other drugs are coming through the pipelines, the latest being the gene therapy drug Zolgensma which is showing a lot of promise as a one time treatment.
As for Oskar's shenanigans ... music, chess, and playing outside with friends is pretty much where his heart is at. He has enjoyed singing, playing drums and melodica, with a wonderful jazz-ensemble at NEC every Saturday (which you will get to hear if you can come to his Jam). And he continues to take voice lessons where he works on both his classical chops and belting out pop and Broadway tunes. Chess is where most of his mind is at though on any given day, and we try to follow along the best we can to support him. There are many full Sundays spent at chess tournaments around New England, and we can truly say it is a great community to be a part of. Oskar added a few trophies to his collection this winter, and among them is a gold for the MA Winter Team Challenge, and a silver in the 4th grade section of the Massachusetts Grade Championship. Happy boy :)
The funds that SMA families have raised through the years are absolutely the reason we have come as far as we have. We feel so humble and grateful towards all of those who came before us, and who laid the groundwork for the wellbeeing of kids like Oskar. By continuing this important fundraising work, we hope we are doing a little bit of the same for future babies born with SMA. To donate, simply follow the link to our fundraising page and click the Donate Now button on the top right.
If you can join us on Saturday June 15th, anytime between 2pm and 6pm, we would be so happy to see you. Our address is 156 Warren Street, in Newton Centre.
Thank you from the bottom of our hearts xxxx
Íma, David, and Oskar
Party location is the backyard of:
156 Warren Street
RAIN DATE WILL BE SUNDAY JUNE 16TH, SAME TIME