BELIEVE: A Benefit Concert for the Dup1...

Another quick update...the link to purchase Concert t-shirts and CDs in the previous update did not work. Please use this link to place your orders :). Thank you!

http://events.constantcontact.com/register/event?llr=pdmqvzbab&oeidk=a07e5ha8n7171138aa0

We are so excited to write this update! As of today, the donation to the Dup15q Alliance will be over $9,500 (including concert ticket sales, t-shirt and CD sales and the GoFundMe page donations)!

The concert on January 13th and 15th was a great success! We had a record audience turnout and the bands were amazing! We were also grateful to the many local Dup15q families that came to the event and to Len Poore, who spoke each night to the audience about Dup15q. Attached is a photo of a Plugged In student performing at the concert!

We are also amazed that the amount donated to the GoFundMe page is more than double the original goal!!!! Thank you all SO much for your generosity, support and love :).

This GoFundMe page will be up through January 31, so there is still time for more donations to come in.

"BELIEVE" Concert t-shirts and CDs of the original songs written by Plugged In students about Dup15q can be purchased at http://events.constantcontact.com/register/event?llr=pdmqvzbab&oeidk=a07e5ha8n7171138aa0. Please spread the word to your family and friends!

Below is an article written by Nancy Barnett, Nelson and Roland's mom, about the concert. Thank you, Nancy!

We will be posting another update soon with a montage of photos from the songwriting workshop and concert.

Thank you all again!
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“BELIEVE” Benefit Concert for Dup15q Alliance
Boston, MA
By Nancy Barnett
Mother to Nelson, age 12, Roland age 9 (Dup15q), Maya, age 4


A band formed. A rhythm sounded. A harmony blended. A 33-band rock concert blew the roof off the joint for the Dup15q Alliance on Friday, January 13th and 15th. And a deposit of almost $9,000 ching-chinged!

What started simply enough as a garage-like teen band with a program called Plugged-In, quickly turned into the biggest, only, and first ever rock concert to benefit Dup15q Alliance. Nelson, my oldest son and electric guitarist, was determined to make this happen. His brother Roland, Dup15q syndrome, was his inspiration.

Plugged-In, based out of Needham, Massachusetts, is a non-profit teen rock band program that teaches youth musical skills while stressing the importance of giving back to the community. Three times a year they have benefit concerts and all the students vote to choose the organization for which the concert will raise money. This year, Nelson presented a persuasive and heartfelt pitch to the Plugged-In musicians and won the vote for all of us.

This is how it all started back in October 2011. The Plugged-In musicians got an opportunity to vote and vie for their various charities at a Community Engage evening. Thirteen musicians presented bids for their charity that evening. When it was Nelson’s turn to present, he hung up his homemade poster with a picture of him pushing Roland in his Convaid stroller. He started speaking to the noisy crowd about his brother. Like helium streaming out of a punctured balloon, the entire room full of adults and very rambunctious adolescents faded to silence as they began to listen to his every word. He talked about the rare occurrence of this particular chromosome disorder. He explained the severity of Roland’s profile, being non-verbal, frustrated, anxious, behaviorally challenged and constantly interrupted by daily seizures. Given that Nelson is often witness to the occasional awkward, inappropriate, and stressful situations experienced during community outings with Roland, he called on his fellow musicians to support Dup15q Alliance as a means to promote awareness and recognition of people with disabilities. In closing, he mentioned that Roland’s 9th birthday would coincidentally fall within a week of the concert. “Roland doesn’t understand the concept of a birthday party, but he loves listening to music. A concert in his honor would be a very special way to celebrate him.” Nelson ended his presentation over a roar of applause.

When the final vote was tallied, an overwhelming amount of ballots selected Dup15q Alliance as the recipient of the Plugged-In benefit concert! “It was a lesson to me about love,” commented the drummer’s father, who was present at the Community Engage evening.

Sandra Rizkallah and Tom Pugh, founders of Plugged-In, have been organizing benefit concerts, three times a year, for the past ten years. When they told us that they typically raised $3K from these concerts, our eyes lit up from such a figure. Not wanting to come in below average, we brainstormed various ways to meet that goal. First, we set up a do-it-yourself on-line fund-raising service, www.gofundme.com/believe and contacted all our friends, family, and fellow Dup15q Alliance members. Within the initial four weeks of our efforts, we met our $3K goal. Then, we sent out press releases to local media and watched our numbers continue to rise.

At the end of December, Plugged-In offered a song-writing workshop for interested musicians to learn how to write original composition and record a CD. Len Poore, Dup15q Alliance board chair, came to speak to the musicians about Dup15q syndrome, bringing with him his wife, Joanne, and their 21-year old daughter, Lisa. The music composed that afternoon was heavily influenced by their visit and the students’ newly acquired knowledge. Songs on the CD include: In love With Your Sound, Don’t Listen (You’re Not Alone) and an instrumental entitled Drop 25 which relates to seizure activity. Anya Olsen, who wrote the lyrics and sang In Love With Your Sound, remarked how inspired she was by meeting the Poore family, “It was an amazing experience making music for something that actually mattered.” The music was recorded and professionally mixed. CDs were sold at the concert.

We received media recognition from a couple of papers, including a write up in the Boston Globe arts column the day before the concert. The Boston Globe printed a large photo of Nelson and Roland together with a corresponding article entitled, “Brother’s Love Strikes a Chord.”

The concert was incredible - and incredibly loud and long! The approximate number of people attending both nights totaled 350. The concert went from 6p – 11p each night. The three song-writing bands performed live versions of their original tunes. What was even more incredible was the gathering of five Dup15q families from Massachusetts who were meeting for the first time. Despite all the noise, one family even brought their 2-year old baby Justin to join in the fun. Instantly, we all became best friends. Roland was home in bed during the concert, due to increased seizure activity, but Nelson’s band still sang “Happy Birthday” to him as only rock stars can do. It was truly an inspiration to see everyone rocking out for our kids and Dup15q Alliance!

Check out this wonderful article about the concert in today's Boston Globe:

"Young musicians rock out in Needham to support Dup15q" - http://ht.ly/8qVAu