| Together! - Free Internet Edition
Chromosome 22 Central www.c22c.org/ | Issue 38 | December 2007 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. Our current issue is 8 pages with more family pictures and stories. Help support us by becoming a paid subscriber and receive the full version! | |||
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Joshua (age 3 1/2, Emanuel Syndrome) & brother Jordan wish everyone Happy Holidays! | |||
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OUR WEBSITE: http://www.c22c.org/ *Message boards Recently added to our website: Our colour brochure - download and share around! Don’t forget to visit our website to sign up for one of our e-mail support lists. Connect with other members today! IF you have not done so before, please take a moment out and fill in a membership form on our website: http://www.nt.net/a815/memform.pdf Don't forget that a complete newsletter available by regular mail (or full .pdf version electronically), which includes family stories, is available by paid membership only (see below to become a paid member). RECENTLY RELEASED JOURNAL ARTICLES Please visit the reference page of our website for updated listings of articles on: NOTICE
15th
Annual International Scientific
Meeting-VeloCardioFacial Troy, Michigan Check website www.vcfsef.org
for additional information on hotel, conference logistics, area
attractions, etc. Please come to learn about the latest updates in
therapy, current research, network with other families, attend breakout
sessions with the experts, and much more. News
from the St-Pierre Household! Some of you know that three years
ago, our family adopted a beautiful little girl from China. This January,
we return to China to adopt a little 2 year old boy we will call Jaxon, a
little brother for Maia (now 12, who has Emanuel Syndrome) and Jaida, 3
1/2. For those of you who are carriers
of the 11/22 translocation and facing the debate of how best to add to
your family—this was our way and it’s been a phenomenal experience. I
am always happy to talk about it to anyone looking into the adoption
route. Adoption is a beautiful thing! Feel free to follow our journey—we
will be posting from China about our experiences. http://www.jaxonerik.blogspot.com
We leave January 19th, 2008! |
US
TAX STATUS CONFIRMED (yeah!)
"We are pleased to inform you that upon review of your
application for tax exempt status we have determined that you are exempt
from Federal income tax under section 501(c)(3) of the Internal Revenue
Code". That is the
opening of the letter received from the Internal Revenue Service dated
September 21st, 2007. This
determination is retroactive to the date the organization was formed which
was February, 2006. Donations to Chromosome 22 Central, Inc.
(US) are used to support the work of the organization.
We provide an annual grant to our Canadian counterpart as payment
for their web and newsletter services and the remainder is used to support
activities that benefit our members such as
meetings and gatherings for families that take place in the US,
printing of information, mailing costs among other things.
It is important to note that our application specifically states
that we are not allowed to make grants to individuals.
We can only make payments to vendors or other organizations that
serve the needs of the majority of our members.
When donations are received at the head office, a thank you letter
will be issued by the end of the calendar year.
This letter will serve as your receipt for tax purposes.
Please be sure to contact the office if you have not received your
thank you letter/donation receipt by January 31st.
For this reason, it is important that you provide a current mailing
address with your donation. Often our members are enthusiastic about
fundraising. There are
specific rules that we must follow when conducting fund raising
activities. Most importantly,
we cannot sell goods to raise funds. We
are allowed to sell token items such as our tee shirts and wrist bands
however; the primary purpose of these items it for promotion of our
organization and not fundraising.
We are also not allowed to conduct raffles or lotteries.
Please be sure to contact the head office for pre-approval before
conducting a fundraising campaign to avoid jeopardizing our tax status by
conducting a non-allowable fundraising campaign.
We are very excited about our tax status approval.
This is a wonderful opportunity for our organization to step up to
a new level in family support. As
you all know, it has never been about the money.
It is always about the families.
Just knowing that there is someone else out there who truly
understands what you are going through is
huge help and comfort. Thank
you to each of our members who have reached out for this contact.
Each of our kids are very special. Murney Rinholm, President, Chromosome 22
Central, Inc. (USA) Remember: ALL Membership fees should
still be submitted to our Canadian Head Office, as well as Canadian
donations, as we are also a registered Canadian Charity. Our US office is
strictly for US donations received! (and we need them, please help keep us
running!) Dear Families with a 22q11 deletion: We are trying to find genes that that are
responsible for predicting severity of velo-cardio-facial syndrome in children
and adults with the disorder. We need saliva samples or blood from
families (child-mom-dad). We are in need of specimens for whom the
affected child has no heart defects and those for whom the child has had very
severe heart defects, such as tetralogy of Fallot . We need to obtain a
copy of an echocardiography report for both categories as well as the ability to
obtain additional basic clinical information from your doctor. We have
kits we can send to you that are pre-paid. All information will be kept
confidential. This study would tremendously help future generations
of children with the disorder. If you are interested in participating, or
have questions, please email me at morrow@aecom.yu.edu (and ablonska@aecom.yu.edu).
Thank you. Children's Hospital of Wisconsin (Milwaukee, WI) Offers a multidisciplinary VCFS clinic designed to address the various
medical, educational, and psychosocial needs of children and families affected
by Velocardiofacial/DiGeorge syndrome (22q11.2 deletion). The team provides
coordinated care and individualized case management by experienced
professionals. They include specialists from Genetics, Speech/Language
Pathology, Otolaryngology, Audiology, Psychology, Occupational Therapy, and
other specialists as needed (cardiology, orthopedics, endocrinology, plastic
surgery, dental, etc.). For more
information or to make an appointment call LuAnn Weik, MS, CGC, program
coordinator and senior genetic associate, at (414) 266-2031.
The Upper Midwest VCFS/DGS Community (www.vcfsconnect.org)
is currently seeking parent help and input for planning local and regional-based
family support group events. If you
are interested in being involved with the Wisconsin VCFS/DGS Family Support
Group, please contact Adriane Baylis at wivcfsgroup@hotmail.com or 414-266-5702. A study is being conducted by the
Clinical Immunization Safety Assessment (CISA) Network. This is a national network of experts in the
field of immunization safety studies. The study is open to children with
congenital anomalies consistent with 22q11.2 deletion syndrome such as DiGeorge
syndrome (DGS) or velocardiofacial syndrome (VCFS). The purpose of
this study is to help doctors determine which children with a deletion in the
chromosome 22q11.2 can be safely immunized. There are no additional lab tests,
shots, or medicines for this study. Your child will not be seen or examined.
Study investigators at Columbia University Medical Center would review
information that already exists in medial records. If you want more information
about participating in this study please contact the Columbia University
Research Assistants. Either Ximara Peckham (Phone:
(212) 305-2876, Email-xp2101@columbia.edu) or Kathleen Jakob (Phone:
(212) 305-2790, Email-kj160@columbia.edu). This study has been approved by the
Columbia University Medical Center Institutional Review Board (IRB).” Please do not hesitate to contact us if you have
any questions. Philip L. Graham III,
MD MS is the Principal Investigator for this study, and can be reached at (212)
305-2790. My name is Kathleen Jakob
(Phone: (212) 305-2790, Email kj160@columbia.edu)
and I am the study coordinator. Sincerely, Kathleen Jakob, RN BSN, Division of Pediatric
Infectious Diseases, Columbia University Medical Center, New York, NY | ||
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TWENTY-SEVEN MONTHS OF ANTISTRESS DRUG THERAPY (Updated to 88 months of treatment as of September
2007) | |||
C22C Inc. is a registered Federal Non-Profit Organization, with charitable status in Canada. Canadian donations will receive a tax receipt. C22C Inc. (USA) is registered and with non-profit status and donations are eligible for a tax receipt. We are grateful for all donations which help keep us operating! Thank you to those of you who have supported us in the past with your generosity. If you can afford to, offer to pay a yearly membership fee. This will entitle you to a subscription to TOGETHER, which is no longer distributed on-line. It costs money to print, post, maintain our website as well as other expenses. Our suggested membership dues are: Families 1 year - $15, 2 years, $27, 3 years, $35. Either US funds for US/International Members, or Canadian funds for Canadian members. PLEASE SEND MEMBERSHIP FEES TO OUR CANADIAN ADDRESS or use PAYPAL - link located on our website. For donations from US members only, please submit them to our US Head Office. We have been operating for years with no mandatory fees. Please help us continue to operate and grow! Additional donations are tax-deductible and a tax-receipt will be provided (for US and Canadian Members). Free memberships will include as always, being listed with our network database of families, and free C22C NewsAlerts via email, offering info on upcoming events and research. | |||
