A printed copy (or full pdf version via email) with more information, stories and photos is available by paid membership only. See below for details. 

22q11.2 Deletion Syndrome: Practical Implications for Behavior and Learning

March 3-4, 2007

UC Davis M.I.N.D. Institute, Sacramento, California

www.elwyngenetics.org

CONFERENCE DATE: Saturday and Sunday, March 3-4, 2007

LOCATION: UC Davis MIND Institute

2825 50th Street, Sacramento, CA 95817

(916) 703-0280

OVERVIEW: The 22q11.2 deletion syndrome is a recognizable pattern of physical and developmental features associated with a missing section (deletion) of genetic material on chromosome 22. The condition is sometimes referred to as velo-cardio-facial syndrome, Shprintzen syndrome, or DiGeorge syndrome. The effects of the deletion include a variety of physical findings, such as heart abnormalities, cleft palate, immune deficiencies, and a characteristic facial appearance. In addition, children and adults with the 22q11.2 deletion syndrome show a spectrum of developmental issues, including learning, social, and emotional disabilities. This conference will focus on the educational and behavioral features associated with the syndrome, as well as practical strategies for addressing those needs. To learn more about the 22q11.2 deletion syndrome, visit www.22q.org

 WHO SHOULD ATTEND? This conference will be of interest to parents, special educators, psychologists, genetics professionals, nurses, social workers, and others involved in the care of children and adults with the 22q11.2 deletion syndrome. The focus will be on practical and understandable information.

 WHO CAN I CONTACT FOR MORE INFORMATION?

Brenda Finucane, MS, CGC, Executive Director, Genetic Services at Elwyn

Phone: 610-891-2313, Fax: 610-891-2377, Email: brenda_finucane@elwyn.org

 Or further information online at  www.elwyngenetics.org.

CALLING ALL FLORIDA FAMILIES:

 We (Florida families) are looking to create a database with all Florida families who have a family member with a diagnosis 22q11 DS. The list will be used for a possible Florida conference and hopefully future meetings. Please send the following information to me at bsouth@swfla.rr.com  : Name, address, Email address or go to VCFSFlorida group and add your info in the address database. http://health.groups.yahoo.com/group/vcfsflorida/

 Thanks, Barb (Naples, FL)

22q13 Guide Now Available in French:    If you know any families who have French as their primary language, I just posted the French translation of "Raising a Child with 22q13 Deletion"

(Éduquer un enfant avec la suppression 22q13)in the files section of the Yahoo e-group.

 Many, many (beaucoups, beaucoups!) thanks to Kathy and John Taylor who produced this version for us, joining the Italian translation that the Mezzadri's provided last year.  Randy

OUR WEBSITE: http://www.c22c.org/ 

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PLEASE take a moment out and fill in a copy of the membership form on our website: http://www.nt.net/a815/memform.pdf  . I have changed it to include a signature. EVEN IF you are a current, active member of the group, please submit a signed form. Don’t worry about the membership fees right now unless you can afford to pay or have already paid (we would appreciate it however!) – right now, the most important thing to me is getting our database current. I will be happy to take a faxed or scanned SIGNED form, to save you the postage.

Families who send in their forms and agree to share contact info with other members will be given new updated contact listings once I have completed the project. Thank you SOOOO much in advance!!    Stephanie

Don't forget that a complete newsletter available ONLY by regular mail (or full .pdf version electronically), which includes family stories, is available by paid membership only (see below).  

Hemos agregado una lista en español  de correo electrónico para familias hispano hablantes - esta lista es para  aquellas familias que posean algun integrante  con CUALQUIER alteración del cromosoma 22, al igual que es la lista del c22c.  Por favor visítela en http://es.groups.yahoo.com/group/c22ces/   ¡Unase ahora!

We welcome new members, photos, stories, and ideas for the newsletter. We’d love to hear from you!  

RECENTLY RELEASED JOURNAL ARTICLES

Please visit the reference page of our website for updated listings of articles on:

• 22q11 Deletion

Thoughts On Education - submitted by T.L. Myers

We have charter schools, Mennonite schools, Amish schools, Catholic schools, private schools and now they are talking about gender-segregated schools.  I've even heard that racial segregation is now something that blacks are seeking in schools.  This message should be interpreted to mean that lumping us all together does not work.  Sometimes when we look backwards we find the answers.  Perhaps it is just the attitude towards each other's differences that we need to change, and accept. 

   My daughter was lucky enough to begin her Elementary School education in a school for disabled children in Wyomissing, Berks County (a suburb of Reading).  The entire school encompassed every level and type of disability, and then separated the children into age-appropriate grades.  There were so many wonderful supports in that school, to address every conceivable need any child might have.  The teachers, aides and staff members were all committed to special needs children.  They didn't act like these children were thrust or forced upon them, like most public school teachers still act. 

  The children in this wonderful school didn't make fun of one another because they knew that they were all "in the same boat", so to speak.  Now THAT'S where I first experienced acceptance and tolerance -- the like I have never again ever seen elsewhere.  These children felt empowered, important, and good about themselves.  Their strengths were brought to the forefront, and that's what you remembered most about them -- not the crutches, or the wheelchair, or the hearing aides, or braces, or lack of vision, or difficulty speaking.  This school no longer exists.  Even the building itself was demolished.

 It makes me truly sad when I see how my son has to struggle through public school, and I KNOW how good his educational experience actually could be -- and we call this our children's future.  No thanks, I'll take the past.  I think we had things right the first time, and they didn't need to be "fixed". 

If I could make one major point, I would like to tell everyone willing to listen, that mainstreaming all disabled children into public school was one of the worst ideas anyone ever came up with.  The concept that it would "normalize" handicapped children, through the exposure to their "normal" peers, is ludicrous.  To even imagine that all of these children would be accepted by their peers was also a cruel misconception. 

    So many parents have had to resort to removing their children from public schools, and attempting to home school them.  Those that could afford it have sent their children off to private schools.  This should not just be an option available to the rich.  I would love to see the return of special schools, funded by the public school system.  It would be a major improvement in the quality of education our special needs children would receive, and it would greatly improve our children's attitude, self-esteem and self-worth. I'm certain that many others will echo my sentiments.

   If we would be considering separate education based on wealth, gender, religion, and race, then why wouldn't we consider educating our most vulnerable population, the Learning Disabled/Impaired, separately.  Surely it is much more difficult for them to function in a public school environment, than it is for children with different income levels, male or female, from diverse religious and racial backgrounds. 

    In all fairness to public school teachers, they were ill-prepared for the mainstreaming of disabled children into the public school system.  Even now, with itinerant supports offered through the local intermediate unit, and special education classes called by other names (Learning Support, Resource Room), most children remain in the public school mix of peers for the majority of their school day.  Only core academics are offered in a Learning Support Room, so all secondary “specials” (which include Health, Music, Art, Library, Computer, Home Economics, Wood/Metal Shop, GYM, etc.) are with the child’s same age/grade-level peers in Regular Ed.  This might work for many students who only have a problem with math, for example, but it does not work for children who are Learning Disabled across the board, in all academic areas.

Most public school teachers have large classes, with a broad range of abilities, and they do not have the time or capability of investing the extra efforts needed to teach many special needs children.  They have to aim for the middle, which is why the over-achievers sometimes are bored and held back, and the under-achievers just fall through the cracks, but are passed on from year to year.  Public schools do not hold children back in school anymore, until they learn what they need to learn to function independently in society, or be gainfully employed. 

Just one other thing that I would hope could be brought up at the roundtable discussions.  The crucial importance of the return of formal Summer School.  Those who know or have worked with learning disabled children, know that they almost all suffer from recoupment-regression issues.  So much work and time is wasted every school year when a child masters anything at all, only to lose that mastery over the long summer months away from education.  These children need and would all benefit from, extended school years.  Most children would benefit from year-round school with semester breaks, like college.  Summer Schools, extended school years, and/or year-round schools would benefit all the children -- not just our special needs population.  Teachers would have to spend far less time re-teaching and reviewing material that was already learned the previous school year, and more time focusing on each school year's goals.

I can only hope that enough people agree with me, and see this as a need that can no longer be ignored.  We need to address this deficit now.  Please help me to advocate for the children who have become the minority without a voice.

Thanks for listening.

Tara Lynne Myers, Parent and Child Advocate and Mentor, Nurse, and Mother, 106 South Park Street, Richland, Pa. 17087-0090

717-866-6331  admyers@lmf.net

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