and information regarding her daughter who was recently diagnosed with ODD.

Frustrated by search that did not offer her any assistance, Tammy finally found

Parent to Parent of Pennsylvania and placed a call to us to be matched with a Peer 

Supporter. Tammy had a successful Peer Supporter match and then became a Peer

Supporter for Parent to Parent of Pennsylvania herself. 

In August of 2006, Tammy called Parent to Parent to ask for assistance because she

was considering forming a support group for parents of children with 22q deletion.

Tammy was sent all the pertinent documentation in order for her to start a support

group. I met with Tammy to give her additional information she needed before her first

support group meeting. That day I saw in Tammy what she did not see in herself - a

wonderful advocate for both of her children with special needs, who had everything

she needed to start her support  group - except confidence. 

Tammy was enthusiastic, a creative thinker, and most of all, had a real passion to help

families in similar situations. Tammy wanted to have a group that could offer support to

each other, plus a vision of more. Knowing that through education and family networking,

families are better able to help their children with 22q deletion, Tammy saw a support 

group that would provide financial assistance to families wishing to attend 22q deletion

conferences. She also saw an organization that would help provide the children affected

by 22q deletion the chance to be able to attend summer camps - where for a few days,

they could interact with other children like themselves and have activities tailored for

their special needs. 

Tammy asked, "What if no one shows up, how do I get in touch with others who have

family members with 22q deletion, should I have a speaker, what do I talk about, how do

I start, run and end a meeting, should I provide a snack, what should I provide as a snack."

Tammy was concerned she could not pull it off. I told her "Tammy, you can do this. If you

want me there, I would be happy to come to your first meeting. I will help you with the

meeting and present Parent to Parent services to you attendees."  I gave Tammy the one

thing that I thought she really needed, the support and thoughts of someone who had

been in her shoes and felt the insecurities from starting a support group many years ago.
 

Tammy's first 22q deletion support group meeting was held in September 2006. There

were three parents of children with the syndrome in attendance. Those three parents, led

by Tammy's tireless attitude, went on to form FACE22. FACE22 is now a statewide

support group with a volunteer board, by-laws and their own EIN (Employee

Identification Number). Recently, they were sponsored by a vendor fair to help raise

money so that they could file for 501(c)3 status.  

Tammy's confidence was growing and FACE22's future plans included a golf outing and a 

walk event. I told Tammy that I loved her great kid-friendly logo and the catchy group

name she created. She said that one of the other parents took the initiative to approach a

graphic designer to design the logo. Tara Myers, another great parent advocate for 22q 

deletion from Richland, PA, who also happens to be a Parent to Parent Peer Supporter,

helped her create the name.

FACE22 - a support network for persons who have a chromosome deletion, specifically

chromosome 22, and their caregivers.  FACE22's mission is to support each other as

parents and caregivers while educating the school system, the medical community and

the world about our great kids and the extra attention they may require to reach their full

potential as adults. 

The 22q Deletion Syndrome is an abnormality on the twenty-second chromosome that

can cause such health problems as heart defects,  immune deficiency, palate and speech

issues, hearing loss,  developmental delays, learning challenges, and social/emotional

issues. Present in one out of every 2,000 to 4,000 births, 22q is almost as common as

Down Syndrome and there are many people that are not diagnosed until much later in life.

For more information,  please contact  Parent to Parent of Pennsylvania's  SW regional office.

Best wishes to Tammy and FACE22. 

 
                                                      Article submitted by Maria Silva