Tag Archives: MAGIC Foundation

Call For Participants in RSS Study

RSS-People.org have been asked to help spread the word about the USA-based medical study into scoliosis and kyphosis. The RSS division of the MAGIC Foundation hopes to expand on the current research into Russell Silver Syndrome, building on the solid foundations of studies into genetics and growth hormone.  Below you can read about the background to the study, what it hopes to achieve and, most importantly, how you can participate.

Soon enough you will learn about the new MAGIC RSS/SGA Research and Education Fund …. but to start things off, Children’s Hospital Los Angeles (CHLA) and Jennifer Salem from MAGIC are doing a study on RSS individuals and scoliosis and kyphosis.

To participate you need to sign the consent forms and complete the survey that is available on-line or in hardcopy. It should only take about 5 to 10 minutes to complete. You do NOT have to have scoliosis or kyphosis, you or your child just need to be diagnosed as possible or confirmed RSS.

MAGIC is eager to create more studies on RSS to get published, not just ones on genetics or growth hormone therapy.  But we need your help!!! Please can you give 10-15 minutes of your time? You can fill out the consents and do the survey right from your own home!!

If you are interested in participating, simply email Jennifer at magicrss  [at] mindspring.com  and say “I am interested” and Jennifer will forward you the CHLA introductory letter and the study documents.

Please note www.rss-people.org is not affiliated to MAGIC, but is here to help organisations dedicated to advancing the knowledge and help and support of living with Russell Silver Syndrome.

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Growth Convention Round-Up

If you are looking for support or would like to meet others with RSS, you have the chance by joining one of the conventions in either the United States and the UK.

United States

MAGIC Foundation – Adults Convention
is on from 10th to 12th June 2011 at the Marriott  O’Hare Hotel in Illinois
A Russell Silver Syndrome division is not included as part of the adult programme, however MAGIC is willing to support the creation/attendance of such group, but need expressions of interest first.  Please contact the MAGIC Foundation or Kim on the TARSS Facebook group in in the first instance.

Download the adult convention programme book »

MAGIC Foundation – Children’s Convention
is on from 14th to 17th July 2011 at Westin Yorktown in Lombard, Illinois.
A chance for parents with children with Russell Silver Syndrome to meet other parents facing the same issues.
People with Russell Silver Syndrome are also welcome.  MAGIC will try and arrange seminars and events for people who wish to attend.

MAGIC Foundation website »

With both conventions, you need to make sure you are a paid member.

United Kingdom

Child Growth Foundation
5th November 2011 in Northampton

The UK’s version of a growth convention for parents with children with various growth conditions, including Russell Silver Syndrome.

RSS Adults/Teens
Depending on numbers of RSS teens/adults attending, seminars etc will be arranged. Further details/information to follow as convention details are made, anyone wishing to attend should ensure they are current members of the CGF.

Contact the CGF for more details or talk to Kim on the TARSS Facebook group.
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