Wednesday, December 26, 2012
Thursday, November 1, 2012
2013 Buddy Walk Kickoff Meeting - Location Change
2013 Buddy Walk Kickoff Meeting
November 13th @ 6:30 pm
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Wednesday, October 31, 2012
31 for 21 Day #31
Posted on SchulenburgSticker.com
Down Syndrome Foundation entering 2nd year
Posted: October 23, 2012
The Down Syndrome Foundation of South Texas (DSFSTX), formed in July 2011 by several families wanting to bring services for Down syndrome individuals to the area, is now entering its second year and has sponsored a number of activities to help achieve its goal.
Since July 2011, the organization has sponsored three educational seminars, hosted a summer music therapy program for members and individuals with disabilities, and celebrated with two family fun events (one at Magic Bounce in Victoria and one at Splashway Water Park in Sheridan).
DSFSTX has two representatives on the Texas Down Syndrome Advocacy Coalition involved in legislative advocacy.
This year, the organization held its first Buddy Walk in February and A“Maze”ing Kid Fall Festival in October at Rocky Creek Maze to help spread awareness.
The members worked two Hallettsville Market Days to raise funds for the organization as well as community awareness, and hosted Dimes for Downs in area schools in October 2011 as an awareness project geared toward elementary-age students.
Members supported and participated in the Dash for Downs run in Yoakum in May 2012.
DSFSTX also supported families and children by donating to the National Down Syndrome Society, sponsoring a family for Audrey's Day at the Beach in Rockport (a special event for families of individuals with Down syndrome), and being a local sponsor of the Special Olympics. DSFSTX also made a donation to South Texas Sparkles, a student-run cheerleading program designed for students with special needs.
Entering its second year, the organization plans to increase opportunities for members and the community to become more involved through educational seminars, the Buddy Walk, the A“Maze"ing Kid Fall Festival and other events throughout the year.
DSFSTX serves the rural communities in Lavaca, DeWitt, Fayette, Gonzales and neighboring counties. Its goals are to teach others about Down syndrome by building public awareness and acceptance of the abilities of individuals with Down syndrome; learn more about Down syndrome by providing seminars and workshops from professionals that work with Down syndrome individuals; and celebrate the individuals with Down syndrome that have touched people’s lives.
DSFSTX thanks everyone for their support and contributions that helped make the first year such a success. For more information, follow DSFSTX on Facebook or its blog site dsfstx.blogspot.com, or email dsfstx@yahoo.com.
Since July 2011, the organization has sponsored three educational seminars, hosted a summer music therapy program for members and individuals with disabilities, and celebrated with two family fun events (one at Magic Bounce in Victoria and one at Splashway Water Park in Sheridan).
DSFSTX has two representatives on the Texas Down Syndrome Advocacy Coalition involved in legislative advocacy.
This year, the organization held its first Buddy Walk in February and A“Maze”ing Kid Fall Festival in October at Rocky Creek Maze to help spread awareness.
The members worked two Hallettsville Market Days to raise funds for the organization as well as community awareness, and hosted Dimes for Downs in area schools in October 2011 as an awareness project geared toward elementary-age students.
Members supported and participated in the Dash for Downs run in Yoakum in May 2012.
DSFSTX also supported families and children by donating to the National Down Syndrome Society, sponsoring a family for Audrey's Day at the Beach in Rockport (a special event for families of individuals with Down syndrome), and being a local sponsor of the Special Olympics. DSFSTX also made a donation to South Texas Sparkles, a student-run cheerleading program designed for students with special needs.
Entering its second year, the organization plans to increase opportunities for members and the community to become more involved through educational seminars, the Buddy Walk, the A“Maze"ing Kid Fall Festival and other events throughout the year.
DSFSTX serves the rural communities in Lavaca, DeWitt, Fayette, Gonzales and neighboring counties. Its goals are to teach others about Down syndrome by building public awareness and acceptance of the abilities of individuals with Down syndrome; learn more about Down syndrome by providing seminars and workshops from professionals that work with Down syndrome individuals; and celebrate the individuals with Down syndrome that have touched people’s lives.
DSFSTX thanks everyone for their support and contributions that helped make the first year such a success. For more information, follow DSFSTX on Facebook or its blog site dsfstx.blogspot.com, or email dsfstx@yahoo.com.
Tuesday, October 30, 2012
31 for 21 Day #30
2013 Buddy Walk Kickoff Meeting
November 13th @ 6:30 pm
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Monday, October 29, 2012
31 for 21 Day #29
Anyone who comes in contact with Morgan Hartman never forgets the meeting. She brings smiles, hugs and unconditional love to everyone she encounters. When you interact with Morgan, what you see and hear is truly from her heart. There are no filters or barriers to Morgan’s expressions and her genuine desire to be your true friend.
Morgan is very outgoing yet shy about certain things. She recognizes her special needs and at times wishes she “were another kid,” but even so, she never forgets to be kind, thoughtful and witty – something we all wish we could achieve more often.
She embraces life not truly understanding every detail of that which surrounds her, but with a keen eye and ear for the little details many of us take for granted or never notice.
She is a typical teenager who enjoys her music, videos and her dog and cat. Morgan has had to deal with some physical challenges in her life, but she has overcome them beyond all expectations because of her positive attitude and perseverance.
While recuperating on a ventilator in ICU after an extremely complicated surgery, Morgan still made sure all around her were comforted whether through her unforgettable smile or an occasional thumbs up to let everyone know she was alright.
Morgan’s boundless love and ability to “soar” above her challenges were the true inspiration for this amazing park. Morgan’s desire to make everyone around her happy is magnified and expanded by the worldwide appeal of this park. That happiness will spread to all those who have special needs, their families, caregivers and those loving friends who volunteer their time to help ensure the success of Morgan’s Wonderland. It is Morgan’s fervent hope that everyone with special needs - young and old, healthy or ailing, introspective or outgoing - will be touched in a very special way by this park. An oasis of friendship . . . a shrine of inclusion . . . an unforgettable wonderland . . . Morgan’s Wonderland!
Sunday, October 28, 2012
31 for 21 Day #28
Health Care Guidelines
http://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/
http://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/
Saturday, October 27, 2012
31 for 21 Day #27
Source: http://www.nih.gov/news/
NIH establishes Down syndrome patient registry
Registry connects individuals with Down syndrome with researchers
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.
People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.
If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.
Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.
The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.
"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."
Down syndrome most frequently results from an extra copy of chromosome 21 in the body’s cells. Infants with Down syndrome are likely to have certain physical characteristics, such as short stature and distinctive facial features, as well as health conditions like hearing loss, heart malformations, digestive problems, and vision disorders. Although Down syndrome most commonly results in mild to moderate intellectual disability, the condition occasionally involves severe intellectual disability. In addition, some individuals with Down syndrome age prematurely and may experience dementia, memory loss, or impaired judgment similar to that experienced by individuals with Alzheimer disease.
"Down syndrome is complex," Dr. Maddox said. "A wide array of scientific expertise is required to address all its aspects in a comprehensive manner."
Development of a patient registry was a leading recommendation in the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
The plan for the registry was supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the Research Plan. Membership on the Consortium includes individuals with Down syndrome and family members, representatives from prominent Down syndrome and pediatric organizations, and members of the NIH Down Syndrome Working group, an internal NIH group that coordinates NIH-supported Down syndrome research.
"We're grateful to those who provided us with the advice that allowed us to establish a national registry," Dr. Maddox said. "We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online."
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
NIH establishes Down syndrome patient registry
Registry connects individuals with Down syndrome with researchers
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.
People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.
If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.
Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.
The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.
"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."
Down syndrome most frequently results from an extra copy of chromosome 21 in the body’s cells. Infants with Down syndrome are likely to have certain physical characteristics, such as short stature and distinctive facial features, as well as health conditions like hearing loss, heart malformations, digestive problems, and vision disorders. Although Down syndrome most commonly results in mild to moderate intellectual disability, the condition occasionally involves severe intellectual disability. In addition, some individuals with Down syndrome age prematurely and may experience dementia, memory loss, or impaired judgment similar to that experienced by individuals with Alzheimer disease.
"Down syndrome is complex," Dr. Maddox said. "A wide array of scientific expertise is required to address all its aspects in a comprehensive manner."
Development of a patient registry was a leading recommendation in the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
The plan for the registry was supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the Research Plan. Membership on the Consortium includes individuals with Down syndrome and family members, representatives from prominent Down syndrome and pediatric organizations, and members of the NIH Down Syndrome Working group, an internal NIH group that coordinates NIH-supported Down syndrome research.
"We're grateful to those who provided us with the advice that allowed us to establish a national registry," Dr. Maddox said. "We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online."
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
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