Dear Friends of The International 22q11.2 Foundation,
This week, the The International 22q11.2 Foundation mailed a letter to all of our friends and members. The letter is a message from parent and chair of the board of Directors, Sheila Kambin, MD. Sheila’s letter highlights the many important and exciting developments from 2015 including:
“I’m happy there is a place that parents can share our challenges and our victories. New answers come every day. Thank you for the continued research and knowledge that you share. We have to stick together otherwise we may completely fall apart.”
We promised to tell you why this has been such a momentous year. Here are just a few examples:
- A new prevalence study suggests that the 22q11.2 deletion and duplication syndromes may be as common as Down syndrome, occurring in as many as approximately 1/1000 pregnancies. This means that approximately 300,000 Americans and 5 million individuals worldwide may be affected. While confirmation studies are needed, one thing we know for certain is that 22q11.2 is much more common than previously believed and may not fall into the category of “rare” diseases. This makes the need for an organization like the International 22q11.2 Foundation all the more necessary!
- We launched a completely revamped 22q.org website, providing the latest science and research-based clinical information about all-things related to 22q.
- We revamped our parent group contacts into a Family Support Network bringing all related national and international organizations together under a unified banner with a single voice.
- Sadly, two collaborating 22q U.S. – based family organizations closed in 2015. We are now the leading patient advocacy organization for families affected by 22q in North America, a responsibility we take very seriously.
- Our 5th Annual 22q at the Zoo Worldwide Awareness Day was held with >10,000 participants in 115 cities!
“Each year, I wake with excitement in the middle of the night to view hundreds of 22q at the Zoo photos posted on Facebook. First New Zealand followed by Australia, Asia, Africa, Europe, North and South America, closing in the Pacific Islands having literally wrapped 22q around the globe – it is the one time I feel connected to the entire 22q community!”
So, what would we like to do next?
- Fund research by up-and-coming scientists, which has the benefit of both advancing knowledge about
22q and engaging young professionals who may go on to focus on 22q during their career.
- Expand our Family Support Network to include all 50 U.S. states and additional international partners.
- Enhance our “Same Name Campaign” to increase awareness leading to greater detection and improved care.
- Make newborn screening for 22q a reality in 2016, so that no family misses a window of treatment opportunity!
“Having a child with a syndrome no one has ever heard of can be a very lonely place. Thank you for providing me with the knowledge and resources I need to take good care of my daughter. I am so grateful for your support.”
We received the above message after sending this mother information about 22q, answering her questions by phone and email and connecting her to local parents and 22q multidisciplinary clinics. That is what we do – 365 days a year.
Tax-deductible contributions are essential to our continued sustenance and success. So please go to 22q.org and click donate. Alternatively, please mail a check knowing in advance that you will be making a significant impact on the 22q community.
With warm regards,
Sheila P. Kambin, MD
Board Chair, on behalf of the International 22q11.2 Foundation, Inc. Proud Mom of a wonderful son with 22q11.2DS
The International 22q11.2 Foundation, Inc. is an IRS- approved 501(c)(3) nonprofit, Tax ID #: 36-4540878
PO Box 532 Matawan, NJ 07747 USA