Trumbull, CT (PRWEB) November 03, 2011
The Rett Syndrome Research Trust is pleased to announce a campaign to boost awareness of Rett Syndrome in the most iconic of all advertising venues – Times Square in New York City. A newly created public service announcement will run an average of nine times an hour for three months starting November 1st on the colossal 6000 square foot Mediamesh display at the corner of 42nd Street and 8th Avenue. An estimated 1.5 million people are expected to view the PSA daily.
Rett Syndrome strikes little girls almost exclusively, with first symptoms usually appearing before the age of 18 months. These children lose speech, motor control and functional hand use, and many suffer from seizures, orthopedic and severe digestive problems, breathing and other autonomic impairments. Most live into adulthood and require total, round-the-clock care. Rett Syndrome is caused by mutations in a gene called MECP2.
The Rett Syndrome Research Trust is the premier organization devoted exclusively to promoting international research on Rett Syndrome and related MECP2 disorders.
While Rett Syndrome has become a high-profile disorder in scientific circles, it is still fairly unknown in the lay and medical communities; thousands of girls and women remain un- or misdiagnosed. We welcome this unique opportunity to help raise the profile of this disease, which has been dramatically reversed in pre-clinical models.
“I am so thankful to Bill Koenigsberg, CEO and Founder of Horizon Media, who secured this spectacular advertising real estate; Garage Media, owner of the Port Authority Display; A2AMedia, who manages the screen, for giving us the opportunity to showcase our disorder; and Jon Denny, film and TV producer, for creating our PSA. When smart, talented, generous people come together for a good cause, amazing things can happen,” said Monica Coenraads, Executive Director of RSRT and parent of a teenaged daughter severely disabled by Rett Syndrome.
“We are thrilled to help RSRT get out their message for such a worthy cause,” said Bill Koenigsberg.
About the Rett Syndrome Research Trust
The Rett Syndrome Research Trust is the premier organization devoted exclusively to promoting international research on Rett Syndrome and related MECP2 disorders. Our goal is clear: to heal children and adults who will otherwise suffer from this disorder for the rest of their lives. With our experience and tight focus, RSRT has an unparalleled knowledge base and extensive networking abilities in the world of high-level research. This puts RSRT in a unique position to stimulate, evaluate, support and monitor ambitious and novel scientific projects. To learn more about the Trust, please visit http://www.ReverseRett.org
Source: PRWEB
Tuesday, November 8, 2011
A Mid-Michigan Family Shares Their Experience With Rett Syndrome
Source: WLNS.com
Note: Click on the title to read the full news.
Note: Click on the title to read the full news.
Families Raise Awareness About Rett Syndrome
By DAN MANNARINO Staff reporter
12:23 a.m. EDT, October 16, 2011
NEW YORK (PIX11)—
Imagine you have thoughts, hopes, and dreams but no way to actually express them. It's a rare disorder called Rett Syndrome that affects young girls. Worldwide, 20 girls are born every day with the disorder.
Dr. Sasha Djukic says the disorder doesn't begin right at birth. "Imagine you have a child who is 1 year old, happy and healthy, and then the disease starts, in a matter of a few months it drops the ability to speak, use her hands, walk," says Djukic.
Abby Diamond is now a beautiful, 8-year-old girl. At age 3, she was diagnosed with Rett Syndrome and stopped walking and communicating with her family.
The problem is, not many people know about the disease, so not many people donate money to research.
So today, under perfectly blue skies, families gathered on the steps of the Tweed Courthouse in Lower Manhattan and in other locations around the globe to raise awareness about Rett Syndrome.
"Climbing steps is a symbolic gesture, bringing you upward and forward," says Djurik.
In an inspiring sight to watch, the girls slowly but surely climbed the 30 steps. Joining them were members of the New York City Fire Department who, in some cases, carried these brave girls to the top.
"The girls are good girls, pure in nature, friendly and trapped inside these bodies," says Abby's father, Erick Diamond.
12:23 a.m. EDT, October 16, 2011
NEW YORK (PIX11)—
Imagine you have thoughts, hopes, and dreams but no way to actually express them. It's a rare disorder called Rett Syndrome that affects young girls. Worldwide, 20 girls are born every day with the disorder.
Dr. Sasha Djukic says the disorder doesn't begin right at birth. "Imagine you have a child who is 1 year old, happy and healthy, and then the disease starts, in a matter of a few months it drops the ability to speak, use her hands, walk," says Djukic.
Abby Diamond is now a beautiful, 8-year-old girl. At age 3, she was diagnosed with Rett Syndrome and stopped walking and communicating with her family.
The problem is, not many people know about the disease, so not many people donate money to research.
So today, under perfectly blue skies, families gathered on the steps of the Tweed Courthouse in Lower Manhattan and in other locations around the globe to raise awareness about Rett Syndrome.
"Climbing steps is a symbolic gesture, bringing you upward and forward," says Djurik.
In an inspiring sight to watch, the girls slowly but surely climbed the 30 steps. Joining them were members of the New York City Fire Department who, in some cases, carried these brave girls to the top.
"The girls are good girls, pure in nature, friendly and trapped inside these bodies," says Abby's father, Erick Diamond.
Thursday, August 25, 2011
A ray of hope for Indian Rett Angels and their families
Renowned neuro-scientist, Dr Mriganka Sur is all set to collaborate with the All India Institute of Medical Sciences (AIIMS), New Delhi for a research on finding a cure for neuro development diseases like Autism, Rett syndrome, etc.
Speaking to the Chandigarh Newsline, Dr Sur, professor of Neurosciences and head, department of Brain and Cognitive Sciences, Massachusetts Institute of Technology (MIT), USA, said, “We are planning to collaborate on a research programme on neuro development disorders. Despite the rarity of the disease, Rett syndrome which is found 95 per cent in girls due to their mutations, in India, the percentage of girls suffering from it is quite high. Even in USA, one in every 150 children is prone to Autism and in the United Kingdom, the chances of having autism are even higher, one in every 100. Though there are clinical trials and constant researches going on, there is no cure yet for most neuro development disorders.”
Dr Sur, who is the director of Simon’s Initiative on Autism, said, “Though some studies have established that Autism is mostly a genetic disease, yet gene therapy is no cure for this genetic disorder.”
Though there are no pre natal tests available to detect if the child could be born with autism, however, Dr Sur warns that autism in family history may be a sign. “If anyone in the family has a history of autism, chances are that the baby could be born with the disorder too. But instead of losing hope, would be parents should approach genetic counsellors or informed physicians.”
The available therapies for autism include applied behaviour analysis (ABA), developmental models, structured teaching, speech and language therapy, social skills therapy, and occupational therapy, he added.
The diseases
Autism spectrum disorder (ASD) is a range of complex neuro development disorders, characterised by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behaviour. Usually, the symptoms start showing before the child is three years old.
Rett syndrome is a childhood neuro developmental disorder that affects females almost exclusively. The child generally appears to grow and develop normally, before symptoms begin. Early symptoms may include loss of muscle tone, a slowing of development, problems crawling or walking, and diminished eye contact. As the syndrome progresses, a child will lose purposeful use of hands and the ability to speak. The inability to perform motor functions is perhaps the most severely disabling feature of Rett syndrome, interfering with body movement.
Source: Indian express.com
Note: To read the original post please click on the title of this news.
Speaking to the Chandigarh Newsline, Dr Sur, professor of Neurosciences and head, department of Brain and Cognitive Sciences, Massachusetts Institute of Technology (MIT), USA, said, “We are planning to collaborate on a research programme on neuro development disorders. Despite the rarity of the disease, Rett syndrome which is found 95 per cent in girls due to their mutations, in India, the percentage of girls suffering from it is quite high. Even in USA, one in every 150 children is prone to Autism and in the United Kingdom, the chances of having autism are even higher, one in every 100. Though there are clinical trials and constant researches going on, there is no cure yet for most neuro development disorders.”
Dr Sur, who is the director of Simon’s Initiative on Autism, said, “Though some studies have established that Autism is mostly a genetic disease, yet gene therapy is no cure for this genetic disorder.”
Though there are no pre natal tests available to detect if the child could be born with autism, however, Dr Sur warns that autism in family history may be a sign. “If anyone in the family has a history of autism, chances are that the baby could be born with the disorder too. But instead of losing hope, would be parents should approach genetic counsellors or informed physicians.”
The available therapies for autism include applied behaviour analysis (ABA), developmental models, structured teaching, speech and language therapy, social skills therapy, and occupational therapy, he added.
The diseases
Autism spectrum disorder (ASD) is a range of complex neuro development disorders, characterised by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behaviour. Usually, the symptoms start showing before the child is three years old.
Rett syndrome is a childhood neuro developmental disorder that affects females almost exclusively. The child generally appears to grow and develop normally, before symptoms begin. Early symptoms may include loss of muscle tone, a slowing of development, problems crawling or walking, and diminished eye contact. As the syndrome progresses, a child will lose purposeful use of hands and the ability to speak. The inability to perform motor functions is perhaps the most severely disabling feature of Rett syndrome, interfering with body movement.
Source: Indian express.com
Note: To read the original post please click on the title of this news.
Thursday, August 4, 2011
Fourth Annual Rett syndrome Meeting and Symposium: 23rd October 2011
Dear All,
As October is "Rett syndrome Awareness Month", So Indian Rett Syndrome Foundation is going to organize the Fourth Annual Rett Syndrome Awareness Meet/Symposium with help of Department of Pediatrics, AIIMS, New Delhi.
This meeting will be joined by Parents from different parts of India and Healthcare professionals (Doctors, Therapists, Scientists and Researchers). This one day Meeting/symposium will include lectures on the basics of Rett syndrome and its management, Parent-Doctor interactive sessions and therapy sessions.
Come and Join us to educate yourself and raise awareness about Rett Syndrome, a neurodevelopmental disorder. which primarily affects girls known as "Silent Angels".
We are also looking forward for sponsorships for this event and donations for this cause. Your help and support can improve lives of these little Angels and their families.
Date of Event: 23rd October, 2011
Day: Sunday
Time: 9.30am
Venue: Conference Hall, First Floor, JLN Auditorium,
All India Institute of Medical Sciences
Ansari Nagar
New Delhi-110029
Please save the date in your calenders and let your family/friends know about this by spreading the word.
If you have any queries in regard of this event, please contact us at
info@rettsyndrome.in, info.rett@yahoo.com
Registration to this event is totally free but limited. For registration for this event, please contact
rkhajuria@rettsyndrome.in
admin@rettsyndrome.in
Regards,
Indian Rett Syndrome Foundation
12/1, sector –1, Pushp Vihar,
New Delhii -110017
INDIA
Website: www.rettsyndrome.in
E-mail: info@rettsyndrome.in, admin@rettsyndrome.in, info.rett@yahoo.com
Blog: www.rettsyndromeindia.blogspot.com
Ph# +919999343421
As October is "Rett syndrome Awareness Month", So Indian Rett Syndrome Foundation is going to organize the Fourth Annual Rett Syndrome Awareness Meet/Symposium with help of Department of Pediatrics, AIIMS, New Delhi.
This meeting will be joined by Parents from different parts of India and Healthcare professionals (Doctors, Therapists, Scientists and Researchers). This one day Meeting/symposium will include lectures on the basics of Rett syndrome and its management, Parent-Doctor interactive sessions and therapy sessions.
Come and Join us to educate yourself and raise awareness about Rett Syndrome, a neurodevelopmental disorder. which primarily affects girls known as "Silent Angels".
We are also looking forward for sponsorships for this event and donations for this cause. Your help and support can improve lives of these little Angels and their families.
Date of Event: 23rd October, 2011
Day: Sunday
Time: 9.30am
Venue: Conference Hall, First Floor, JLN Auditorium,
All India Institute of Medical Sciences
Ansari Nagar
New Delhi-110029
Please save the date in your calenders and let your family/friends know about this by spreading the word.
If you have any queries in regard of this event, please contact us at
info@rettsyndrome.in, info.rett@yahoo.com
Registration to this event is totally free but limited. For registration for this event, please contact
rkhajuria@rettsyndrome.in
admin@rettsyndrome.in
Regards,
Indian Rett Syndrome Foundation
12/1, sector –1, Pushp Vihar,
New Delhii -110017
INDIA
Website: www.rettsyndrome.in
E-mail: info@rettsyndrome.in, admin@rettsyndrome.in, info.rett@yahoo.com
Blog: www.rettsyndromeindia.blogspot.com
Ph# +919999343421
Thursday, June 30, 2011
Tuesday, June 28, 2011
Ex Vivo Treatment with a Novel Synthetic Aminoglycoside NB54 in Primary Fibroblasts from Rett Syndrome Patients Suppresses MECP2 Nonsense Mutations
A recent and very interesting article by Vecsler and colleagues
Abstract
BACKGROUND:
Nonsense mutations in the X-linked methyl CpG-binding protein 2 (MECP2) comprise a significant proportion of causative MECP2 mutations in Rett syndrome (RTT). Naturally occurring aminoglycosides, such as gentamicin, have been shown to enable partial suppression of nonsense mutations related to several human genetic disorders, however, their clinical applicability has been compromised by parallel findings of severe toxic effects. Recently developed synthetic NB aminoglycosides have demonstrated significantly improved effects compared to gentamicin evident in substantially higher suppression and reduced acute toxicity in vitro.
RESULTS:
We performed comparative study of suppression effects of the novel NB54 and gentamicin on three MECP2 nonsense mutations (R294X, R270X and R168X) common in RTT, using ex vivo treatment of primary fibroblasts from RTT patients harboring these mutations and testing for the C-terminal containing full-length MeCP2. We observed that NB54 induces dose-dependent suppression of MECP2 nonsense mutations more efficiently than gentamicin, which was evident at concentrations as low as 50 µg/ml. NB54 read-through activity was mutation specific, with maximal full-length MeCP2 recovery in R168X (38%), R270X (27%) and R294X (18%). In addition, the recovered MeCP2 was translocated to the cell nucleus and moreover led to parallel increase in one of the most important MeCP2 downstream effectors, the brain derived neurotrophic factor (BDNF).
CONCLUSION:
Our findings suggest that NB54 may induce restoration of the potentially functional MeCP2 in primary RTT fibroblasts and encourage further studies of NB54 and other rationally designed aminoglycoside derivatives as potential therapeutic agents for nonsense MECP2 mutations in RTT.
Note: Click on the title to read the full article
Source: NCBI-Pubmed
Abstract
BACKGROUND:
Nonsense mutations in the X-linked methyl CpG-binding protein 2 (MECP2) comprise a significant proportion of causative MECP2 mutations in Rett syndrome (RTT). Naturally occurring aminoglycosides, such as gentamicin, have been shown to enable partial suppression of nonsense mutations related to several human genetic disorders, however, their clinical applicability has been compromised by parallel findings of severe toxic effects. Recently developed synthetic NB aminoglycosides have demonstrated significantly improved effects compared to gentamicin evident in substantially higher suppression and reduced acute toxicity in vitro.
RESULTS:
We performed comparative study of suppression effects of the novel NB54 and gentamicin on three MECP2 nonsense mutations (R294X, R270X and R168X) common in RTT, using ex vivo treatment of primary fibroblasts from RTT patients harboring these mutations and testing for the C-terminal containing full-length MeCP2. We observed that NB54 induces dose-dependent suppression of MECP2 nonsense mutations more efficiently than gentamicin, which was evident at concentrations as low as 50 µg/ml. NB54 read-through activity was mutation specific, with maximal full-length MeCP2 recovery in R168X (38%), R270X (27%) and R294X (18%). In addition, the recovered MeCP2 was translocated to the cell nucleus and moreover led to parallel increase in one of the most important MeCP2 downstream effectors, the brain derived neurotrophic factor (BDNF).
CONCLUSION:
Our findings suggest that NB54 may induce restoration of the potentially functional MeCP2 in primary RTT fibroblasts and encourage further studies of NB54 and other rationally designed aminoglycoside derivatives as potential therapeutic agents for nonsense MECP2 mutations in RTT.
Note: Click on the title to read the full article
Source: NCBI-Pubmed
Tuesday, May 31, 2011
Physical and Mental Health of Mothers Caring for a Child With Rett Syndrome
By
Crystal L. Laurvick, MPH, Michael E. Msall, MD,Sven Silburn, MS (ClinPsych) Carol Bower, PhD, Nicholas de Klerk, PhD,Helen Leonard, MBChB
ABSTRACT
OBJECTIVES. Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome.
METHODS.
We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental component summary scores as the outcome measures of interest. Mothers (n 135) of children with Rett syndrome completed the SF-12 measure as part of the Australian Rett Syndrome Study in 2002. The analysis investigated linear relationships between physical and mental health scores and maternal, family, and child characteristics.
RESULTS. Mothers ranged in age from 21 to 60 years and their children from 3 to 27years. Nearly half of these mothers (47.4%) indicated that they worked full-time or part-time outside the home, and 41% had a combined family (gross) income of 40 000 Australian dollars. The resultant model for physical health demonstrated that the following factors were positively associated with better maternal physical health: the mother working full-time or part-time outside the home, having some high school education, having private health insurance, the child not having breathing problems in the last 2 years, the child not having home-based structured therapy, and high scores on the Family Resource Scale (indicating adequacy of time resources for basic and family needs). The resultant model for mental health demonstrated that the following factors were positively associated with better maternal mental health: the mother working full-time or part-time outside the home, the child not having a fracture in the last 2 years, lesser reporting of facial stereotypes and involuntary facial movements, being in a well-adjusted marriage, and having low stress scores.
CONCLUSIONS. Our study suggests that the most important predictors of maternal physical and emotional health are child behavior, caregiver demands, and family function.
Note: Click on the title to read the full article.
Source: Pubmed
Crystal L. Laurvick, MPH, Michael E. Msall, MD,Sven Silburn, MS (ClinPsych) Carol Bower, PhD, Nicholas de Klerk, PhD,Helen Leonard, MBChB
ABSTRACT
OBJECTIVES. Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome.
METHODS.
We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental component summary scores as the outcome measures of interest. Mothers (n 135) of children with Rett syndrome completed the SF-12 measure as part of the Australian Rett Syndrome Study in 2002. The analysis investigated linear relationships between physical and mental health scores and maternal, family, and child characteristics.
RESULTS. Mothers ranged in age from 21 to 60 years and their children from 3 to 27years. Nearly half of these mothers (47.4%) indicated that they worked full-time or part-time outside the home, and 41% had a combined family (gross) income of 40 000 Australian dollars. The resultant model for physical health demonstrated that the following factors were positively associated with better maternal physical health: the mother working full-time or part-time outside the home, having some high school education, having private health insurance, the child not having breathing problems in the last 2 years, the child not having home-based structured therapy, and high scores on the Family Resource Scale (indicating adequacy of time resources for basic and family needs). The resultant model for mental health demonstrated that the following factors were positively associated with better maternal mental health: the mother working full-time or part-time outside the home, the child not having a fracture in the last 2 years, lesser reporting of facial stereotypes and involuntary facial movements, being in a well-adjusted marriage, and having low stress scores.
CONCLUSIONS. Our study suggests that the most important predictors of maternal physical and emotional health are child behavior, caregiver demands, and family function.
Note: Click on the title to read the full article.
Source: Pubmed
Monday, May 30, 2011
Daily tips for day to day living with Rett syndrome : Advice from the Internation Rett Syndrome Foundation Experts
Bathing
If she does not sit without support, it may be hard to get her in and out of the tub and keep her stable and safe while you wash her.
There are a number of waterproof bath chairs available, ranging from mesh sling-back styles to rigid plastic benches and chairs.
A hand-held shower hose can be very useful in the tub, especially for hair washing.
Waterproof wheelchairs are available for use in roll-in showers.
A mesh table that hooks into the back of a roll-in shower provides a safe way to bathe without undue bending by the caregiver.
Lifting to Prevent Back Injuries
It is important to learn how to lift correctly, so that you place the least amount of strain on your body, particularly your back. It is a good idea to attend one of your daughter’s PT sessions to get suggestions for the best ways to care for her with the least lifting possible. The school district may even allow you to have special PT sessions for training purposes. Ask your school administrator or request it in her IEP. While good lifting techniques can prevent injuries, they will also make transfers safer and easier. A training session should include: transferring in and out of your car, in and out of the tub, in and out of sitting to stand position, placing the wheelchair in and out of the car, and any other situations which pull on your back. When lifting, widen the base of your stance and bend your legs while keeping your back straight. When transferring from bed to chair, lean your daughter forward into your shoulder. A sliding board is an inexpensive piece of equipment which can be used for safe transfers. If your daughter is able to learn to assist you, practice often so she can gain strength to help. There are a number of mechanical devices when lifting becomes too difficult. Ramps, platform lifts, stairway lifts, and elevators increase accessibility and decrease back strain. Bathtub and bedside lifts can be invaluable. When changing diapers, it is better to roll the girl on her side to place the diaper under her rather than to lift her hips. It may not seem like a lot of strain, but over time, lifting the wrong way can be harmful.
The general principles of lifting are:
* the force is against you
* lift from the waist
* add upper body weight
* watch your weight
* warm up before lifting
The causes of back injuries include:
* lifting from the waist, and twisting
* lifting overhead or away from you
* heavy, repetitive lifting
* awkward position
* unbalanced load
* sitting/standing in one position too long
Traveling
Vacation and Travel For Families with Special Needs Children:
Most families with children choose to vacation and travel during the summer months, and it may take some planning to have a successful vacation. Even more so for families with children who have special needs. There are many things to consider when planning a vacation: destination, transportation, hotel or other overnight arrangements, activities, adaptations, and general accessibility, to name a few.
Tips for Air Travel:
* Contact the airline as early as possible for special assistance, or use a travel agent who is familiar with making special reservations.
* If possible, ask for a non-stop flight to avoid airport shuffle.
* If you use a car seat, make sure it is certified for air travel.
* Make sure to label all equipment with your name, address, and phone number.
* If your child’s wheel chair is checked, remind the flight attendant before landing so she can make a radio inquiry to make sure the chair is delivered promptly.
* Make arrangements for special meals in advance. Do take along some of your child’s favorite snacks and drinks.
* Take your child to the toilet or change her diaper before the flight.
* Invest in a Walkman or DVD player and a good set of barrettes to anchor the headset.
* Offer your child something to eat or drink during descent.
Additional Travel Tips:
* Make advanced arrangements with car rental services.
* Before you leave home, get a disabled parking placard that can be used everywhere.
* Check with your hotel to be sure your room and facilities are handicap accessible.
* The following is a list of Web sites, which addresses those considerations. They contain information about vacation travel through articles, books, Internet links, and other resources.
1. A wonderful Directory of Summer Camps for Children with Disabilities was compiled by the National Information Center for Children and Youth with Disabilities (NICHCY). It contains disability-specific as well as general camp resources.
2. The Global Access Disabled Travel Network is a Web site containing personal travel experiences, as well as information on travel books, specific destinations, tips on planning, hotels and resorts, etc.
3. Travel with Kids offers information and links to cruise ship accessibility, tour operators and travel agents specializing in special needs, outdoor vacations for people with disabilities, and much more.
4. The Parenting Special Needs Web site has a section on Accessible Summer Recreation. It includes accessible travel, camps for special children, recreation and sport, adaptive equipment, and also just for fun activities for children with special needs.
5. The Enabled RVer hosts articles on topics related to RV travel, such as accessible RVs, the Handicapped Travel Club (HTC), travel guides, campgrounds and specific destinations, resources, and adaptive equipment.
6. Access-Able Travel Source contains information on travel with disabilities, mature travel, disability magazines, access guides, wheelchair travel, scooter rental, accessible transportation, world destinations, lists of travel professionals, links, and tips for the traveler with disabilities.
7. The Project ACTION Accessible Travelers' Database was created to assist tourists with disabilities to access mass transit systems while traveling to other cities. The database includes information on hotel/motel shuttles, accessible taxis, private bus/tour companies, van rentals, public transit operators, and national 800 numbers.
8. The Disability Travel and Recreation Resources web site includes information and links on topics such as travel planning, destinations, transportation, air travel, children, and books.
9. Emerging Horizons is a magazine, available online and in print, about accessible travel for people with mobility disabilities. It includes access information, resources, news and travel tips.
10. The Society for Accessible Travel & Hospitality (SATH) actively promotes awareness, respect, accessibility, and employment for persons with disabilities in the tourism industry. SATH contains disability-specific 'How To Travel' articles, as well as an extensive list of resources for the traveler with disabilities.
11. Accessible Recreation on Federal Lands provides a listing of government resources that manage federal recreation sites in the United States. It also includes the Accessibility Data Management System (ADMS), an online resource containing accessibility information about many federal facilities.
12. The National Center on Physical Activity and Disability web site contains a virtual library with an extensive list of resource directories, fact sheets, bibliographies, and monographs. Topics range from adaptive equipment, adapting activities in recreation programs, camping, hiking, fishing, scuba, and much more.
Although the sources listed above seem extensive, it is just the tip of the iceberg. Explore what will best fit you and your needs as a family
Source: International Rett Syndrome Foundation (www.rettsyndrome.org)
If she does not sit without support, it may be hard to get her in and out of the tub and keep her stable and safe while you wash her.
There are a number of waterproof bath chairs available, ranging from mesh sling-back styles to rigid plastic benches and chairs.
A hand-held shower hose can be very useful in the tub, especially for hair washing.
Waterproof wheelchairs are available for use in roll-in showers.
A mesh table that hooks into the back of a roll-in shower provides a safe way to bathe without undue bending by the caregiver.
Lifting to Prevent Back Injuries
It is important to learn how to lift correctly, so that you place the least amount of strain on your body, particularly your back. It is a good idea to attend one of your daughter’s PT sessions to get suggestions for the best ways to care for her with the least lifting possible. The school district may even allow you to have special PT sessions for training purposes. Ask your school administrator or request it in her IEP. While good lifting techniques can prevent injuries, they will also make transfers safer and easier. A training session should include: transferring in and out of your car, in and out of the tub, in and out of sitting to stand position, placing the wheelchair in and out of the car, and any other situations which pull on your back. When lifting, widen the base of your stance and bend your legs while keeping your back straight. When transferring from bed to chair, lean your daughter forward into your shoulder. A sliding board is an inexpensive piece of equipment which can be used for safe transfers. If your daughter is able to learn to assist you, practice often so she can gain strength to help. There are a number of mechanical devices when lifting becomes too difficult. Ramps, platform lifts, stairway lifts, and elevators increase accessibility and decrease back strain. Bathtub and bedside lifts can be invaluable. When changing diapers, it is better to roll the girl on her side to place the diaper under her rather than to lift her hips. It may not seem like a lot of strain, but over time, lifting the wrong way can be harmful.
The general principles of lifting are:
* the force is against you
* lift from the waist
* add upper body weight
* watch your weight
* warm up before lifting
The causes of back injuries include:
* lifting from the waist, and twisting
* lifting overhead or away from you
* heavy, repetitive lifting
* awkward position
* unbalanced load
* sitting/standing in one position too long
Traveling
Vacation and Travel For Families with Special Needs Children:
Most families with children choose to vacation and travel during the summer months, and it may take some planning to have a successful vacation. Even more so for families with children who have special needs. There are many things to consider when planning a vacation: destination, transportation, hotel or other overnight arrangements, activities, adaptations, and general accessibility, to name a few.
Tips for Air Travel:
* Contact the airline as early as possible for special assistance, or use a travel agent who is familiar with making special reservations.
* If possible, ask for a non-stop flight to avoid airport shuffle.
* If you use a car seat, make sure it is certified for air travel.
* Make sure to label all equipment with your name, address, and phone number.
* If your child’s wheel chair is checked, remind the flight attendant before landing so she can make a radio inquiry to make sure the chair is delivered promptly.
* Make arrangements for special meals in advance. Do take along some of your child’s favorite snacks and drinks.
* Take your child to the toilet or change her diaper before the flight.
* Invest in a Walkman or DVD player and a good set of barrettes to anchor the headset.
* Offer your child something to eat or drink during descent.
Additional Travel Tips:
* Make advanced arrangements with car rental services.
* Before you leave home, get a disabled parking placard that can be used everywhere.
* Check with your hotel to be sure your room and facilities are handicap accessible.
* The following is a list of Web sites, which addresses those considerations. They contain information about vacation travel through articles, books, Internet links, and other resources.
1. A wonderful Directory of Summer Camps for Children with Disabilities was compiled by the National Information Center for Children and Youth with Disabilities (NICHCY). It contains disability-specific as well as general camp resources.
2. The Global Access Disabled Travel Network is a Web site containing personal travel experiences, as well as information on travel books, specific destinations, tips on planning, hotels and resorts, etc.
3. Travel with Kids offers information and links to cruise ship accessibility, tour operators and travel agents specializing in special needs, outdoor vacations for people with disabilities, and much more.
4. The Parenting Special Needs Web site has a section on Accessible Summer Recreation. It includes accessible travel, camps for special children, recreation and sport, adaptive equipment, and also just for fun activities for children with special needs.
5. The Enabled RVer hosts articles on topics related to RV travel, such as accessible RVs, the Handicapped Travel Club (HTC), travel guides, campgrounds and specific destinations, resources, and adaptive equipment.
6. Access-Able Travel Source contains information on travel with disabilities, mature travel, disability magazines, access guides, wheelchair travel, scooter rental, accessible transportation, world destinations, lists of travel professionals, links, and tips for the traveler with disabilities.
7. The Project ACTION Accessible Travelers' Database was created to assist tourists with disabilities to access mass transit systems while traveling to other cities. The database includes information on hotel/motel shuttles, accessible taxis, private bus/tour companies, van rentals, public transit operators, and national 800 numbers.
8. The Disability Travel and Recreation Resources web site includes information and links on topics such as travel planning, destinations, transportation, air travel, children, and books.
9. Emerging Horizons is a magazine, available online and in print, about accessible travel for people with mobility disabilities. It includes access information, resources, news and travel tips.
10. The Society for Accessible Travel & Hospitality (SATH) actively promotes awareness, respect, accessibility, and employment for persons with disabilities in the tourism industry. SATH contains disability-specific 'How To Travel' articles, as well as an extensive list of resources for the traveler with disabilities.
11. Accessible Recreation on Federal Lands provides a listing of government resources that manage federal recreation sites in the United States. It also includes the Accessibility Data Management System (ADMS), an online resource containing accessibility information about many federal facilities.
12. The National Center on Physical Activity and Disability web site contains a virtual library with an extensive list of resource directories, fact sheets, bibliographies, and monographs. Topics range from adaptive equipment, adapting activities in recreation programs, camping, hiking, fishing, scuba, and much more.
Although the sources listed above seem extensive, it is just the tip of the iceberg. Explore what will best fit you and your needs as a family
Source: International Rett Syndrome Foundation (www.rettsyndrome.org)
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