September 14, 2011
If you are a family of a child with special needs, CDC would like to hear from you!
Dear Family Members:
Family Voices is partnering with the Centers for Disease Control (CDC) in a campaign to learn from families of children and youth with special health care needs about their knowledge, attitudes and beliefs related to influenza prevention and treatment.
Please take time, right now if possible, to complete a brief survey (about 15 minutes).
To access the survey in English, please go to: Family Survey.
To access the survey in Spanish, please go to: Family Survey Spanish Version.
Your knowledge, opinion, and experiences are very important and will help CDC in their work to improve the health and well-being of all children with special healthcare needs. Your r responses will remain anonymous.
More information about this survey may be found in the CDC Invitation letter at
CDC Information.
Please contact Nora Wells (nwells@familyvoices.org) with any questions about this effort.
THANK YOU!
Thursday, September 15, 2011
TEAAM Kamp Kaleidoscope Announcement
REGISTER FOR SUMMER CAMP NOW & GET IN ON THE DISCOUNTED RATE
In years past, camper applications have not been available to families for Kamp Kaleidoscope until January 1 of each year. The construction of The Center Ridge Outpost has opened new possibilities for the future. We are now encouraging families to apply now for 2012! Families that register and pay the full fee before December 31, 2011 will be able to lock in the 2011 price of $250. If you are interested in one of the 2-Session packages it will be $500 (see below).
Because the fees for camp are established based on fundraising success of each year this will be a great advantage. Due to the current economy we hope that we can keep the cost at this level but we cannot guarantee. So we are encouraging families to take advantage of this offer. This fee can be paid all at once or over the next three months in installments. If you do this and camp ends up costing more for the 2012 sessions, you will be paid in full! This fee will be non-refundable but, in the event that your child cannot attend the summer camp, the fee can be applied to other retreat programs.
Just to give you an idea of how this worked in 2011, summer camp cost per camper was actually $450. (Please keep in mind that this amount covers the room and board of the counselors, materials, and camp overhead expenses.) Every camper got a $200 credit, due to fundraiser success, leaving only the $250 balance to be paid. This could go up for 2012. We hope not but it is difficult to know at this point. So, act today!
Dates for Center Ridge Outpost Summer Camps 2012
(You don’t have to select now but you can)
*Available for 2-Session Opportunity
Camp Walapei (18+) *Session 1-June 11-13 *Session 2-June 14-16
Kamp Kaleidoscope (7-17) Session 1-June 18-20 Session 2-June 21-23
*Session 3-June 25-27 *Session 4-June 28-30
Session 5-July 9-11 Session 6-June 12-14
*Session 7-July 16-18 *Session 8-July 19-21
To get started contact TEAAM at 1. 866 993-2437 or at TEAAM Web site.
Together Enhancing Autism Awareness in Mississippi - TEAAM - is a non-profit, volunteer organization comprised of parents, family members, educators and service providers interested in the field of Autism.
In years past, camper applications have not been available to families for Kamp Kaleidoscope until January 1 of each year. The construction of The Center Ridge Outpost has opened new possibilities for the future. We are now encouraging families to apply now for 2012! Families that register and pay the full fee before December 31, 2011 will be able to lock in the 2011 price of $250. If you are interested in one of the 2-Session packages it will be $500 (see below).
Because the fees for camp are established based on fundraising success of each year this will be a great advantage. Due to the current economy we hope that we can keep the cost at this level but we cannot guarantee. So we are encouraging families to take advantage of this offer. This fee can be paid all at once or over the next three months in installments. If you do this and camp ends up costing more for the 2012 sessions, you will be paid in full! This fee will be non-refundable but, in the event that your child cannot attend the summer camp, the fee can be applied to other retreat programs.
Just to give you an idea of how this worked in 2011, summer camp cost per camper was actually $450. (Please keep in mind that this amount covers the room and board of the counselors, materials, and camp overhead expenses.) Every camper got a $200 credit, due to fundraiser success, leaving only the $250 balance to be paid. This could go up for 2012. We hope not but it is difficult to know at this point. So, act today!
Dates for Center Ridge Outpost Summer Camps 2012
(You don’t have to select now but you can)
*Available for 2-Session Opportunity
Camp Walapei (18+) *Session 1-June 11-13 *Session 2-June 14-16
Kamp Kaleidoscope (7-17) Session 1-June 18-20 Session 2-June 21-23
*Session 3-June 25-27 *Session 4-June 28-30
Session 5-July 9-11 Session 6-June 12-14
*Session 7-July 16-18 *Session 8-July 19-21
To get started contact TEAAM at 1. 866 993-2437 or at TEAAM Web site.
Together Enhancing Autism Awareness in Mississippi - TEAAM - is a non-profit, volunteer organization comprised of parents, family members, educators and service providers interested in the field of Autism.
Tuesday, September 13, 2011
New Resource BabysFirstTest.org Informs Parents and Public about Newborn Screening Genetic Alliance Launches Vital Newborn Screening Resource
FOR IMMEDIATE
RELEASE
September 7, 2011 Contact: Natasha Bonhomme
202-966-5557 x211
nbonhomme@geneticalliance.org
WASHINGTON, DC – September 7, 2011 – Baby’s First Test will increase awareness and knowledge of newborn screening and better inform the decision-making process of newborn screening stakeholders, including new parents and healthcare providers across the country. Genetic Alliance launched this new resource today.
Newborn screening has been available for nearly four decades. However, many parents are unaware of the specific conditions for which babies receive screening in their state, how screening takes place and who to contact for more information. Baby’s First Test will serve as a comprehensive guide for many aspects of newborn screening, including conditions covered and what to do in case of a screen positive test result. Sharon Terry, president and CEO of Genetic Alliance notes, “this site aims to support families by promoting earlier education about newborn screening. It will also provide a resource for healthcare providers to educate parents about what to expect after their baby is born.”
In 2008, the U.S. Congress passed the Newborn Screening Saves Lives Act to expand support, research, and education opportunities for newborn screening. As a result of this legislation, the Genetic Services Branch of the Maternal and Child Health Bureau, HRSA, HHS awarded a cooperative agreement to Genetic Alliance and partners to establish an online newborn screening information resource center specifically for parents and the public. The goal is to connect parents and healthcare providers with resources and information relevant to the more than four million newborns screened annually. Since receiving the award, Genetic Alliance and partners mapped out a vision of the site based on this legislation. The process included engagement with state and regional newborn screening programs, input from prenatal care providers, and feedback from consumer advocacy groups. “This launch is a fabulous culmination of a terrific community process, however it is just the beginning for Baby’s First Test. We are excited to continue our collaborative relationships and to build on the foundation of this site,” says Natasha Bonhomme, project director for BabysFirstTest.org
This project has received considerable feedback from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). R. Rodney Howell, M.D., chairman of the SACHDNC notes, “It is vital that parents and the public know the great benefits of newborn screening. Public dialogue about caring for the children of this nation is essential. BabysFirstTest.org, through its partnerships and social media efforts, provides families with immediate and credible resources and provides critical just-in-time information.”
For more information, visit Babys First Test.
RELEASE
September 7, 2011 Contact: Natasha Bonhomme
202-966-5557 x211
nbonhomme@geneticalliance.org
WASHINGTON, DC – September 7, 2011 – Baby’s First Test will increase awareness and knowledge of newborn screening and better inform the decision-making process of newborn screening stakeholders, including new parents and healthcare providers across the country. Genetic Alliance launched this new resource today.
Newborn screening has been available for nearly four decades. However, many parents are unaware of the specific conditions for which babies receive screening in their state, how screening takes place and who to contact for more information. Baby’s First Test will serve as a comprehensive guide for many aspects of newborn screening, including conditions covered and what to do in case of a screen positive test result. Sharon Terry, president and CEO of Genetic Alliance notes, “this site aims to support families by promoting earlier education about newborn screening. It will also provide a resource for healthcare providers to educate parents about what to expect after their baby is born.”
In 2008, the U.S. Congress passed the Newborn Screening Saves Lives Act to expand support, research, and education opportunities for newborn screening. As a result of this legislation, the Genetic Services Branch of the Maternal and Child Health Bureau, HRSA, HHS awarded a cooperative agreement to Genetic Alliance and partners to establish an online newborn screening information resource center specifically for parents and the public. The goal is to connect parents and healthcare providers with resources and information relevant to the more than four million newborns screened annually. Since receiving the award, Genetic Alliance and partners mapped out a vision of the site based on this legislation. The process included engagement with state and regional newborn screening programs, input from prenatal care providers, and feedback from consumer advocacy groups. “This launch is a fabulous culmination of a terrific community process, however it is just the beginning for Baby’s First Test. We are excited to continue our collaborative relationships and to build on the foundation of this site,” says Natasha Bonhomme, project director for BabysFirstTest.org
This project has received considerable feedback from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). R. Rodney Howell, M.D., chairman of the SACHDNC notes, “It is vital that parents and the public know the great benefits of newborn screening. Public dialogue about caring for the children of this nation is essential. BabysFirstTest.org, through its partnerships and social media efforts, provides families with immediate and credible resources and provides critical just-in-time information.”
For more information, visit Babys First Test.
Monday, September 12, 2011
Aerobic Exercise May Reduce the Risk of Dementia
Courtesy of AAIDD via e-mail from Joyce Martin
Any exercise that gets the heart pumping may reduce the risk of dementia and slow the condition's progression once it starts, reported a Mayo Clinic study published in the September 2011 issue of Mayo Clinic Proceedings. Researchers examined the role of aerobic exercise in preserving cognitive abilities and concluded that it should not be overlooked as an important therapy against dementia. (See J. E. Ahlskog, Y. E. Geda, N. R. Graff-Radford, R. C. Petersen. Physical Exercise as a Preventive or Disease-Modifying Treatment of Dementia and Brain Aging. Mayo Clinic Proceedings, 2011; 86 (9): 876 DOI: 10.4065/mcp.2011.0252)
The researchers broadly defined exercise as enough aerobic physical activity to raise the heart rate and increase the body's need for oxygen. Examples include walking, gym workouts and activities at home such as shoveling snow or raking leaves.
They note that brain imaging studies have consistently revealed objective evidence of favorable effects of exercise on human brain integrity. Also, they note, animal research has shown that exercise generates trophic factors that improve brain functioning, plus exercise facilitates brain connections (neuroplasticity). More research is needed on the relationship between exercise and cognitive function, the study's authors say, but they encourage exercise, in general, especially for those with or worried about cognitive issues.
To see the full abstract go to: Aerobic Exercise Abstract.
Any exercise that gets the heart pumping may reduce the risk of dementia and slow the condition's progression once it starts, reported a Mayo Clinic study published in the September 2011 issue of Mayo Clinic Proceedings. Researchers examined the role of aerobic exercise in preserving cognitive abilities and concluded that it should not be overlooked as an important therapy against dementia. (See J. E. Ahlskog, Y. E. Geda, N. R. Graff-Radford, R. C. Petersen. Physical Exercise as a Preventive or Disease-Modifying Treatment of Dementia and Brain Aging. Mayo Clinic Proceedings, 2011; 86 (9): 876 DOI: 10.4065/mcp.2011.0252)
The researchers broadly defined exercise as enough aerobic physical activity to raise the heart rate and increase the body's need for oxygen. Examples include walking, gym workouts and activities at home such as shoveling snow or raking leaves.
They note that brain imaging studies have consistently revealed objective evidence of favorable effects of exercise on human brain integrity. Also, they note, animal research has shown that exercise generates trophic factors that improve brain functioning, plus exercise facilitates brain connections (neuroplasticity). More research is needed on the relationship between exercise and cognitive function, the study's authors say, but they encourage exercise, in general, especially for those with or worried about cognitive issues.
To see the full abstract go to: Aerobic Exercise Abstract.
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