Jesscia Abo

I have never met Jessica or even spoken with her. Yet here I am listing her as one of the good people. Jessica works with my wife, Melissa, at NY1.

One day Jessica heard about Dylan and told Melissa that she wanted to help.

Jessica told Melissa that she was going to do a fundraiser for C22C to help support the 2009 Niagara Falls Meeting.

We have been hoping for a 2009 Niagara Falls C22C meeting but had no idea how we would plan for it or how we could help people get to it.

We had missed the 2006 meeting as Dylan was just born when that event happened and we were not in any shape mentally to attend at that time. Now we of course regret not having attended in 2006.

A 2009 meeting would allow us to meet with other families with Emanuel Syndrome children as well as other chromosome 22 syndromes. We would able to discuss the issues that we deal with on a daily basis with other people who understand what we are going through.

We know that it can be financially difficult for many of these families to make it to the event and we wanted as many people as possible to come to the next one.

Melissa tells me that one of her co-workers was going to do a fundraiser for Emanuel Syndrome and my first reaction was a cynical one. What is she getting out of it? Does she have a family member with it? Do we have to pay her for it?

The answer to those questions was Nothing, No and No. Jessica created, planned, and coordinated the fundraiser completely on her own.

Why would she do such an amazing thing for people who she barely knew for a syndrome she had never even heard of before. She did it because it was the right thing to do.

My next reaction was thanks for the kind thoughts, but what are you really going to do?

Boy were we about to be surprised.

She decided that she was going to create a fundraiser for c22c. She found a location for the event. She got other people to volunteer for the event. She joined the c22c board of directors. She got people to donate items for silent auctions and goodie bags. She got people to attend the event. She took the ball and ran with it. She has coordinated information with Dr. Emanuel and talked to Stephanie St. Pierre on how the funds should be spent.

She has inspired me to want to help out as well. Melissa and I are doing everything possible to support the fundraiser. I have gotten most of my family and friends involved in one way or another.

Thanks to Jessica's efforts with the fundraiser, we will be able to help a lot of people attend the 2009 C22C conference event next year. We are currently expecting 200- 300 people to attend the event. I am hopeful that we can even get more that that.

Anyone who is reading this, I would kindly ask you for your help with the event. The fundraiser will be on October 5, 2008.

Below I have listed the press release for it. Anything you can do to support it would be incredibly appreciated. We would love to see as many people as possible there. If you can make it, that would be wonderful. If you can't attend, any other kind of support that you can provide would be amazing.

Thank you to everyone in advance for their support and especially thank you to Jessica for making all of this possible...

The “Don’t Stop Believin’ Benefit”

About

About Emanuel Syndrome and Dylan

On December 9, 2005, Melissa and Oleg Rabinovich went to the hospital ready to welcome their second child into the world. But as soon as Dylan was born, they knew something was wrong. Dylan had very large extra pieces of skin around his ears and suffered from something doctors called “failure to thrive.” It was not long before Melissa and Oleg learned their son had a very rare and severe genetic disorder called Emanuel Syndrome. Instead of having the 46 normal chromosomes most of us are born with, Dylan was born with 47. The extra chromosome, comprised of small parts of Chromosomes 11 and 22, prevents Dylan from walking or talking. Children with Emanuel Syndrome often endure hours and hours of therapy a day including: physical, occupational, speech, feeding and special instruction.

Emanuel Syndrome is a rare disorder. It is unknown how many children have it, but since the establishment of the support group Chromosome 22 Central, Inc., at least 200 families worldwide have identified themselves as having children with the disorder. Children living Emanuel Syndrome have severe developmental delays and countless medical issues. Many who are born with the disorder die within the first few months. Those who don’t are expected to have shortened life-spans.

But 2-year-old Dylan is defying all odds.

NY1 News Anchor Jessica Abo first learned about Dylan after she started working with his mom Melissa, an executive producer at the station. Jessica had been planning on running the 2008 ING New York City Marathon for several months; and after learning about Dylan, she decided to run the race in his honor, and to organize a benefit to help families around the world living with the devastating diagnosis.

The “Don’t Stop Believin’ Benefit”

Ben

Benefit Details

The benefit will take place on Sunday, October 5th at the Chelsea Art Museum in New York City. NY1 News will be covering the event. The evening will include a V.I.P. reception featuring TV personalities from NY1 News and “America’s Most Wanted” correspondent Jon Lieberman. Tickets for the event will start at $125 for general admission and $175 for V.I.P. Guests will have an opportunity to enjoy an open bar, fabulous food and desserts, live music and a silent auction.

Who We’re Helping

Stephanie St-Pierre created C22C 12 years ago, when her daughter was born with Emanuel Syndrome. Living in Canada, she was told that there was no other child in the country like her daughter Maia. Refusing to believe that, she set out to find other families and as much research as possible. Over the years, Stephanie has gathered family surveys and countless journal articles. Today, Stephanie’s charity is the primary source for parents trying to understand their child’s diagnosis. To help Stephanie with her efforts, Murney Rinholm started Chromosome 22 Central, Inc., a 501(c)(3), which is based in North Carolina. Currently, Stephanie, Murney and Melissa are working on C22C’s 7th annual conference, which will take place in the summer of 2009. The retreat will be the first and only opportunity some families will have to come face-to-face with people living with Emanuel Syndrome and other chromosome disorders. We hope the money we raise will defray the costs of the conference so that more families from around the world can come together to share their resources, knowledge and support.

Get

Get Involved

Our list of sponsors/partners currently includes:
· Arthur Ashe Youth Tennis and Education
· Chelsea Art Museum
· Crayola
· Estee Lauder
· Marc Dorfman Photography
· Poof-Slinky
· Warren Levi Karate
· NY1 News
- Running Center

We are very fortunate to have generous organizations on board that are providing a space, gifts for a silent auction, food and monetary contributions, so we may give all of our proceeds to C22C, Inc.

The “Don’t Stop Believin’ Benefit”

Sponsorship

$100

- Business Card included in event journal, which will be distributed to 500 guests

$500

- Corporate logo included on invitation

- 1/4 page ad in event journal

$1,000

- Corporate logo included on invitation

- Two tickets to V.I.P. reception

- 1/2 page ad in event journal

$2,500

- Corporate logo included on web invitation and souvenir T-shirt

- Four tickets to V.I.P reception

- Full page ad in event journal

$5,000 or more

- Corporate logo and link included on web invitation

- Corporate logo included on souvenir T-shirt

- Eight tickets to the V.I.P reception

- Full Page ad in the event journal

- Logo printed on “Step and Repeat” banner

(This banner will serve as the backdrop for formal photographs when people arrive at the event)

Donations to Chromosome 22 Central Inc., are tax deductible.

The “Don’t Stop Believin’ Benefit”

If you would like to help please contact us teamdylannyc@yahoo.com. Thank you for your consideration and for believing that we can help children like Dylan live to see a better tomorrow.

Sincerely,
Team Dylan

Alyssa Abo, MD
Jessica Abo
Justin Baer
Shira Blumenthal
Lauren Gelman
Tara Gordon
Rachel Hayon
Jason Hill
Sari Lisch
Jonathan Levy
Eli Lunzer
Amy Metzger
Jeffrey Milhalakis
Jill Scott
Heather Shaw
Alana Shultz

Joshua Sigmon
Adam Spoont
Kirk Wagenbach
Josh Zeichner, MD