Rett.com

Information and inspiration for the Rett syndrome community

Archive for June, 2007

Rett Events: RSRF 2007 New York Picture a Cure Benefit

Jun 9

Posted by Rett Dad in Events, Fundraising, Organizations | No Comments

Sothebys_052407June 28, 2007 is the night of the big fundraising event of the year for the Rett Syndrome Research Foundation and this year marks its 5th year in New York City. Rett Syndrome fundraisers all over the world can learn a great deal about successful event fundraising from how this event is staged and promoted. The event is conducted at a premier location, honoring a well-regarded individual, and is conducted by an outstanding Benefit Committee. 

The event is a reception and auction held at the famed Sotheby’s auction house, featuring live entertainment, fantastic food and an incredible silent and live auction.

RSRF’s honoree for this event is Mr. Ric Clark, President and CEO of Brookfield Properties. Brookfield Properties is an office property corporation that owns, develops, and operates premier assets in the downtown core of high-growth North American cities. Brookfield Properties’ buildings define the skylines in many major metropolises including New York, Boston, Washington, D.C., Los Angeles, Houston, Toronto, and Calgary.

For more information about this event, please visit the Rett Syndrome Research Foundation website at RSRF.org

 

 

 

Rett Press: Year-round special education program may end

Jun 8

Posted by Greg Long in Education, Media | No Comments

Source

Grand Rapids Press, Grand Rapids, MI, circulation 133,000

Excerpt

Progress comes slowly for Maiya Novitsky, a 4-year-old with Rett syndrome. Her parents consider just maintaining her current level of ability an accomplishment. But her father, Scott Novitsky, said he is worried Maiya — and other students with severe disabilities — will regress dramatically if she is denied year-round schooling because of a proposed change in state Education Department rules.

"We can see that she’s learning and making gains," Novitsky, of Walker, said. "But if we’re told that she has to take the summer off, they’re going to have to go back and redo everything in the fall. I just don’t know why they would want to do that."

But educators and special education advocates said the proposed change, which would bring the state in line with national standards, should not hinder students who truly benefit from extended time in the classroom.

Article Link

Year-round special education program may end (opens in new window)

Publisher’s Note

This is a good example of how to use a topic that is of current interest to a wider audience to get the word out about Rett Syndrome. The issue in Michigan is that legislators are proposing that a child’s Individual Education Planning (IEP) “committee” be the determining body as to whether a child would receive an extended school year education. Currently that is a mandate in Michigan for all students in special education programs, but legislation would change this. The challenge with this is that it creates a situation whereby the IEP team may end of voting on the issue to reach consensus and the parent usually has just one vote, compared with the school district representatives who form a majority of members on an IEP team. The only recourse if a parent disagrees with the District on any education related issue is to file a costly and lengthy appeal, called a “Fair Hearing”, with an Administrative Law Judge.

Kudos to Scott Novitsky for getting the word out about Rett Syndrome to an audience of 133,00 subscribers and for making the general public aware of this vital educational need.

RSRF and IRSA merge to form the International Rett Syndrome Foundation

Jun 4

Posted by Greg Long in Organizations | No Comments

Publisher’s note:

This is exciting news for the entire Rett Syndrome Community! As members of IRSA and long time supporters of RSRF, we look forward to being of service to this newly combined organization. Here is the press release in its entirety:

News Release:

Monday, June 04, 2007

Rett Syndrome News Release

For Immediate Release
June 4, 2007

Contact: Kathryn Kissam
804.741.3687
804.519.6231
kkissam@comcast. net

International Rett Syndrome Association and Rett Syndrome Research
Foundation Announce Merger Agreement to Form International Rett Syndrome
Foundation

New Organization to Focus on Research, Family Support, Awareness and
Advocacy

Cincinnati, Ohio – The International Rett Syndrome Association (IRSA) and
the Rett Syndrome Research Foundation (RSRF) today announced the intent to
merge their organizations to form the International Rett Syndrome Foundation
(IRSF).

“The rapid increase in scientific knowledge and pace of innovation in the
field of Rett syndrome research and treatment call for increased
coordination, increased funding and the development of a solid,
comprehensive research repository,” said Kathryn Schanen Kissam, chairman of
the board of IRSA. “By joining forces, we are able to combine the unique
expertise of IRSA and RSRF to better serve the individuals with Rett
syndrome and their families.”

“Both RSRF and IRSA have made significant contributions to the advancement
of understanding in Rett syndrome,” said Steve Gallucci, chairman of the
board of RSRF. “We are looking forward to the many opportunities that will
develop from the merging of our organizations and our mutual determination
to make a meaningful difference in the lives of those who have been touched
by Rett syndrome.”

The merger, which has been unanimously approved by both organizations’
boards, is expected to close around July 1 following the completion of
appropriate due diligence and a two-thirds vote of approval by IRSA’s
members. IRSA will declare a special membership meeting to be held at IRSA’s
offices on June 27 at 9:00 a.m.; a proxy vote will be mailed to all members
on June 4.

“I applaud the members of the governing boards of IRSA and RSRF for their
hard work and due diligence at this pivotal point in the history of Rett
syndrome. It has been my privilege to initiate the Rett syndrome movement,
and my greatest honor to see others who share the same determination and
passion join the cause,” said Kathy Hunter, president and founder of IRSA.
Hunter, who will retire from her full-time staff position with IRSA when the
merger is complete, will continue to work for the new organization in a
part-time position as Ambassador, continuing to provide ongoing support
services to families.

The core mission of IRSF will be to fund research for treatments and a cure
for Rett syndrome and to enhance the overall quality of life for those
living with Rett syndrome by providing information, programs and services.
IRSF will also place great importance on advocacy and raising awareness
about individuals with Rett syndrome so the scientific and medical
communities, along with policy-makers, educators, caregivers and the general
public, are better informed about Rett syndrome and motivated to help
research efforts. 

Chuck Curley, the executive director of RSRF, will be the future executive
director of IRSF. Curley cited the critical progress made by a recent
landmark study, in which the symptoms of Rett syndrome (RTT) were reversed
in a genetic mouse model, as one example of the types of critical research
IRSF will support in the future. 

“Continuing research to find a cure and treatments for Rett syndrome is
absolutely imperative, but also expensive,” Curley said. “This merger
empowers us to leverage significant revenue growth created by shared
fundraisers, collaborative minds, broader resources and combined best
practices to create one strong, unified leader in the search for a cure
while providing support services to families impacted by this disorder.”

The IRSF board of directors will be formed with six people chosen by IRSA’s
board and six chosen from RSRF’s board. Kissam will serve as chairman of
IRSF. As noted, Curley will serve as Executive Director of IRSF. Other
executive staff appointments include Monica Coenraads, who will serve as
Biomedical Research Director, and Paige Nues, who will serve as Family
Support Director.

IRSF’s executive offices will be located at the RSRF location in Cincinnati,
Ohio, with family support services operating from IRSA’s offices in Clinton,
MD. IRSF’s web site will be www.rettsyndrome. org.

About Rett Syndrome
Rett syndrome is a neurological disorder which predominately impacts girls.
While there are nearly 4,000 known cases of Rett syndrome in the United
States, the disorder is genetically linked to more widespread neurological
disorders such as autism, mental retardation and schizophrenia. Rett
symptoms begin to manifest between the first six to eighteen months of life
and eventually incapacitates the affected children so that they cannot
survive without constant care. The disorder causes seizures, respiratory and
gastrointestinal abnormalities, and a variety of muscular and motor
impairments.

About IRSA
The International Rett Syndrome Association (IRSA), founded in 1984, is the
world’s oldest and most comprehensive non-profit organization dedicated to
providing thorough and accurate information about Rett syndrome, offering
informational and educational family support, and stimulating research aimed
at finding the cause of Rett syndrome and methods for its prevention,
control and cure. The IRSA’s mission is to provide a better future for girls
with Rett syndrome. The Association has members in all 50 states and 72
foreign countries. For more information please visit www.rettsyndrome. org,
or call
1-800-818-RETT.

About RSRF
The Rett Syndrome Research Foundation was founded in late 1999 by a
passionate group of parents who were committed to funding research aimed at
finding treatments and a cure for Rett syndrome. Today RSRF is the world’s
leading private funder of Rett research. In the last five years RSRF has
funded 104 projects at premiere institutions totaling over $11 million. The
foundation has proven to be fiscally responsible by directing 97% of each
dollar donated directly to program services and was awarded Charity
Navigator’s prestigious 4-Star rating. For more information please visit
www.rsrf.org, or call
1-513-874-3020.

RSRF and IRSA Merger Announcement

Jun 4

Posted by Rett Dad in Organizations | No Comments

FOR IMMEDIATE RELEASE

June 4, 2007
               
CONTACT:  Kathryn Kissam

804.741.3687

804.519.6231
kkissam@comcast.net

International Rett Syndrome Association and Rett Syndrome Research Foundation
Announce Merger Agreement to Form International Rett Syndrome Foundation

New Organization to Focus on Research, Family Support, Awareness and Advocacy

Cincinnati, Ohio – The International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Foundation (RSRF) today announced the intent to merge their organizations to form the International Rett Syndrome Foundation (IRSF).

“The rapid increase in scientific knowledge and pace of innovation in the field of Rett syndrome research and treatment call for increased coordination, increased funding and the development of a solid, comprehensive research repository,” said Kathryn Schanen Kissam, chairman of the board of IRSA. “By joining forces, we are able to combine the unique expertise of IRSA and RSRF to better serve children with Rett syndrome and their families.”

“Both RSRF and IRSA have made significant contributions to the advancement of understanding in Rett syndrome,” said Steve Gallucci, chairman of the board of RSRF. “We are looking forward to the many opportunities that will develop from the merging of our organizations and our mutual determination to make a meaningful difference in the lives of those who have been touched by Rett syndrome.”

The merger, which has been unanimously approved by both organizations’ boards, is expected to close around July 1 following the completion of appropriate due diligence and a two-thirds vote of approval by IRSA’s members. IRSA will declare a special membership meeting to be held at IRSA’s offices on June 27 at 9:00 a.m.; a proxy vote will be mailed to all members on June 4.

“I applaud the members of the governing boards of IRSA and RSRF for their hard work and due diligence at this pivotal point in the history of Rett syndrome. It has been my privilege to initiate the Rett syndrome movement, and my greatest honor to see others who share the same determination and passion join the cause,” said Kathy Hunter, president and founder of IRSA. Hunter, who will retire from her full-time staff position with IRSA when the merger is complete, will continue to work for the new organization in a part-time position as Ambassador, continuing to provide ongoing support services to families.

The core mission of IRSF will be to fund research for treatments and a cure for Rett syndrome and to enhance the overall quality of life for those living with Rett syndrome by providing information, programs and services. IRSF will also place great importance on advocacy and raising awareness about individuals with Rett syndrome so the scientific and medical communities, along with policy-makers, educators, caregivers and the general public, are better informed about Rett syndrome and motivated to help research efforts. 

Chuck Curley, the executive director of RSRF, will be the future executive director of IRSF. Curley cited the critical progress made by a recent landmark study, in which the symptoms of Rett syndrome (RTT) were reversed in a genetic mouse model, as one example of the types of critical research IRSF will support in the future. 

“Continuing research to find a cure and treatments for Rett syndrome is absolutely imperative, but also expensive,” Curley said. “This merger empowers us to leverage significant revenue growth created by shared fundraisers, collaborative minds, broader resources and combined best practices to create one strong, unified leader in the search for a cure while providing support services to families impacted by this disorder.”

The IRSF board of directors will be formed with six people chosen by IRSA’s board and six chosen from RSRF’s board. Kissam will serve as chairman of IRSF. As noted, Curley will serve as Executive Director of IRSF. Other executive staff appointments include Monica Coenraads, who will serve as Biomedical Research Director, and Paige Nues, who will serve as Family Support Director.

IRSF’s executive offices will be located at the RSRF location in Cincinnati, Ohio, with family support services operating from IRSA’s offices in Clinton, MD. IRSF’s web site will be www.rettsyndrome.org.

About Rett Syndrome
Rett syndrome is a neurological disorder which predominately impacts girls. While there are nearly 4,000 known cases of Rett syndrome in the United States, the disorder is genetically linked to more widespread neurological disorders such as autism, mental retardation and schizophrenia. Rett symptoms begin to manifest between the first six to eighteen months of life and eventually incapacitates the affected children so that they cannot survive without constant care. The disorder causes seizures, respiratory and gastrointestinal abnormalities, and a variety of muscular and motor impairments.

About IRSA
The International Rett Syndrome Association (IRSA), founded in 1984, is the world’s oldest and most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and educational family support, and stimulating research aimed at finding the cause of Rett syndrome and methods for its prevention, control and cure. The IRSA’s mission is to provide a better future for girls with Rett syndrome. The Association has members in all 50 states and 72 foreign countries. For more information please visit www.rettsyndrome.org, or call 1-800-818-RETT.

About RSRF
The Rett Syndrome Research Foundation was founded in late 1999 by a passionate group of parents who were committed to funding research aimed at finding treatments and a cure for Rett Syndrome. Today RSRF is the world’s leading private funder of Rett research. In the last five years RSRF has funded 104 projects at premiere institutions totaling over $11 million. The foundation has proven to be fiscally responsible by directing 97% of each dollar donated directly to program services and was awarded Charity Navigator’s prestigious 4-Star rating. For more information please visit www.rsrf.org, or call 1-513-874-3020.