February Brave Kids Newsletter

Monthly UCP-OC receives the UCP Brave Kids Newsletter and we then pass it along to our families, friends and professionals throughout the community. Brave Kids, a program of the United Cerebral Palsy National Office, provides a support community and resources for children and youth, ages 6 – 17,  with disabilities and chronic/life-threatening illnesses and their families and caregivers.

Twin Sisters Who are Hearing Impaired Connect with Super Bowl-winning Player

Twin sisters Erin and Riley Kovalcik, who are partially deaf due to a genetic condition, received a great surprise earlier this month when they met Seattle Seahawks player Derrick Coleman. Coleman caught the attention of millions of people, including the nine-year-old twin sisters from New Jersey, when a Duracell commercial featured his journey of becoming the first legally deaf player in the National Football League (NFL). After one of the sisters wrote an encouraging letter to the star player, their father posted a picture of it on Twitter and sent it to Coleman. “Really was great hearing from a friend who I have so much in common with,” replied Coleman. “Even though we wear hearing aids, we can still accomplish our goals and dreams!” Despite his hectic schedule in preparing for the Seahawks appearance in the Super Bowl, Coleman went the extra mile to connect with Erin and Riley– surprising them in-person and inviting the girls and their family to attend the big game. Click here to see the full story!

If you would like more information about hearing loss, visit United Cerebral Palsy’s My Child Without Limits  website.

Firefighter Teaches Safety for Children with Autism

Massachusetts Firefighter Lance Mason is working hard to educate people on fire safety for children with autism. Mason began his program nearly a decade ago, after his now 12-year-old son was diagnosed with autism spectrum disorder. His program raises awareness about how a person with autism may not react to emergency situations the same way as someone without autism would, and how to help them safely. It includes addressing the role of a caregiver in preparing a loved one with autism, home fire safety and more. Click here to read more.

More information related to fire safety and people with disabilities can be found on the UCP National website. Click here to check it all out.

Student with Cerebral Palsy Receives One-handed Flute

Twelve-year-old Melissa Henricks, who has cerebral palsy and difficulty using her left hand, always dreamed of playing the flute, which is typically a two-handed instrument. Kevin Smith, band director at Selvidge Middle School in Ballwin, Missouri, where Henricks attends, helped to make that dream a reality. Together with his wife and school district, Smith was able to create a custom-made, one-handed flute for Melissa. “It’s amazing how wonderful he could be to make this for me,” said Henricks. But Smith did not stop there– he then constructed a new fingering chart for Henricks to learn her new instrument during their winter break! Click here to read more!

Past article you might have missed…Artist Gives New Look to Disney Princesses
disney28n-14-webItalian artist and fashion critic Alexsandro Palombo gives Disney princesses a new look in his latest piece. The characters are portrayed as women with disabilities in various ways, ranging from Princess Jasmine shown as a double amputee to Cinderella fitting her glass slipper on a prosthetic. Click  here to read more!

Advertisements

The Holidays with a Special Needs Child

College Students Making a Difference for Children with Disabilities this Holiday Season

Sixteen students at the University of Georgia are helping to make sure children of all abilities can enjoy the holiday season– by creating toys specifically designed for children with motor disabilities. The students are taking an assistive technology class called “Geeks With a Cause,” a part of the university’s Freshman Odyssey program, which pairs small groups of first-year students with professors teaching specialized topics.

The toys crafted by the students included larger controls and switches, making it easier for the children to play with them. One young girl with limited muscle control received a toy with adapted switches, which she was able to use to turn the toy on and off. “For her to be able to do something functional, for her to be able to do that; this is very exciting,” her mother said.

The adapted toys brought joy and tears to the toy recipients and their families, and touched the lives of the students in the class. Click here to read more!

One Parent’s Tips for the Holidays

Part of My Child Without Limits’ (MCWL) work is to help support its online community of parents and caregivers who share their ideas, experiences and inspiration with each other. One mother recently shared her tips to help parents of children with autism navigate the holidays. These tips include not going overboard with the decorations and shopping, finding help way in advance for parties, remembering the meaning of the holiday season and more. You can check out these tips by clicking here, and United Cerebral Palsy (UCP) and MCWL wish everyone a happy holiday season!

Giving Tuesday- Thank You!

On Tuesday, December 3, 2013, UCP-OC joined a call to action celebrating a day dedicated to giving. Begun in 2012, #GivingTuesday is a movement to create a national day of giving at the start of the annual holiday season, and follows Thanksgiving, Black Friday and Cyber Monday. #GivingTuesday proves that the holidays can be about both giving and giving back. It celebrates how Americans can do more with their wallets than just shop – and that we Americans can give as good as we get. See our holiday story here.

Thank you to everyone who helped support this year’s #GivingTuesday. Its success would not have been possible without you!

We Want to Hear From You

We love to share our families’ success stories. You can share these with Elizabeth Eckman, UCP-OC’s Marketing & Development Coordinator, at eeckman@ucp-oc.org. Tell us how you and your child live your lives without limits! Your stories could be featured on UCP’s websites, social media or in other UCP campaigns. We’ve already heard from many of you, so stay tuned to see more amazing stories and photos!

As always, we encourage everyone to visit our  Facebook page and website. If you ever have any comments or questions, please feel free to contact Elizabeth.

UCP SmartBrief & My Child Without Limits

UCP SmartBrief


Disability Update:
Judge says NYC emergency plans inadequate for people with disabilities
U.S. District Judge Jesse Furman ruled that New York City’s emergency planning is inadequate to accommodate people with disabilities and the city is in violation of local and federal laws, including the Americans with Disabilities Act. Furman said the city’s plans do not ensure evacuation of people with disabilities, do not provide sufficiently accessible shelters, and do not do enough to inform people about accessible emergency services. The class-action lawsuit was brought by local disability-advocacy groups after Tropical Storm Irene in 2011. The Wall Street Journal (tiered subscription model)

Children with autism are more prone to gastrointestinal problems
In a study involving almost 1,000 2- to 5-year-olds in California, researchers found that gastrointestinal issues, such as diarrhea, food sensitivity and constipation, were six to eight times more prevalent among children with autism than those without the condition. “GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems,” lead author Virginia Chaidez wrote in the Journal of Autism and Developmental Disorders. HealthDay News

Assistive Technology
Children with autism are more prone to gastrointestinal problems
In a study involving almost 1,000 2- to 5-year-olds in California, researchers found that gastrointestinal issues, such as diarrhea, food sensitivity and constipation, were six to eight times more prevalent among children with autism than those without the condition. “GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems,” lead author Virginia Chaidez wrote in the Journal of Autism and Developmental Disorders. HealthDay News

DOT rules to make airport kiosks, airline websites more accessible
New U.S. Department of Transportation rules will require airline websites and airport kiosks to be accessible to people with disabilities. Airlines will be required to make their website pages with key travel information and services accessible to people with disabilities within two years of the rule, and at least 25% of airport kiosks used for such services as printing boarding passes will be required to be accessible within 10 years. Forbes

Transitions
Minn. district switches to inclusion model for students with disabilities
St. Paul Public Schools in Minnesota has closed most of its learning resource centers and placed students with behavioral and emotional disabilities at their home schools to have more interaction with their peers. The change has given most students a chance to be in a regular education classroom. Some student advocates and teachers raised concerns, such as not having enough aides and special-education teachers to co-teach in every classroom with students with disabilities. Pioneer Press (St. Paul, Minn.)

Adding sensory elements to stories can enhance learning
Incorporating sensory experiences, such as feeling a drop of water or smelling a favorite scent, into stories can help enrich learning for all students, says special-educational needs and disabilities consultant Joanna Grace. In this blog post, she shares specific ways sensory stories can be used with a range of student populations, including students with sensory-processing disorders and other special needs. The Guardian (London)/Teacher Network 

UCP News
2013 Design- athon a huge success!

Held in partnership with U.K.-based Enabled by Design and Futuregov, the Design-athon is an international innovation event with a focus on disabilities. More than 100 hackers, designers and inventors came together at the Design-athon to hear from experts, discuss the issues surrounding the need for more accessible, attractive and easier-to-use products for people with disabilities, and to build functional, scalable prototypes. Learn more about the Design-athon and how you can get involved!

World Cerebral Palsy Challenge final results announced
The final fundraising results from the second annual World Cerebral Palsy (CP) Challenge, an international awareness and fundraising campaign for people living with cerebral palsy and other disabilities, were recently announced — and they are amazing! More than $180,000 was raised in the U.S., and $1.6 million was raised worldwide. More than 1,900 individuals from five different countries participated in the World CP Challenge, making it a huge success. Thank you to everyone involved, and we hope to see you again next year! Learn more about the World CP Challenge.

logo

My Child Without Limits

Giving Tuesday

This year, on Tuesday, December 3, 2013, UCP and My Child Without Limits are part of a call to action celebrating a day dedicated to giving. Charities, families, businesses, community centers, students, retailers giving_tuesdayand more will all come together for #GivingTuesday – a movement to celebrate giving and encourage more, better and smarter giving during the Holiday Season that we are proud to be part of.

Since the beginning UCP-OC has relied on support from its community members to continue serving the children and families in Orange County.  #GivingTuesday proves that the holidays can be about both giving and giving back. It celebrates how Americans can do more with their wallets than just shop – and that we Americans can give as good as we get.

Mark your calendar for #GivingTuesday or click here to donate today.

U.S. Preterm Birth Rate Falls But More Can Still Be Done
According to a report released by the March of Dimes, in 2012 the nation’s preterm birth rate was 11.5%, a 15-year low. While it is better than in previous years the U.S. received a grade of C and was ranked 131 out of 184 countries worldwide. There is still very far to go in decreasing the U.S.’s preterm birth rate. Beyond statistics about the numbers of births, the report focuses on the reasons behind the rate and strategies for prevent- including reducing smoking and increasing health insurance coverage among pregnant women.

Click here for full results of the March of Dimes Global Action Report.

Click here for more information about premature births including common associated health problems and treatments from MyChildWithoutLimits.org.

Trying To Teach Empathy Through A New Video Game
quandaryMIT’s Education Arcade and the Learning Games Network created a new free game called Quandary with the idea of engaging kids to start thinking. Quandary approaches the broad topic of ethics by helping students understand how to take a different perspective and learn how to empathize.

As a player you are the captain on an Earth colony on a distant planet charged with the survival of your crew and residents. In order to understand the situation you must interview different characters and organize the information you get in to facts, solutions, or opinions, and then act. The game allows players to experience a diverse set of character viewpoints. Gamer creators believe “The game offers a unique decision-making mechanic, one where the choices and outcomes available to players are not a binary ‘good or bad’, and where there are no easy, right answers.”

Creators are careful to say the game doesn’t teach ethics, per se. Instead they “…see games as an organized space for playful exploration and through the process people encounter and form new ideas and concepts, they begin to construct knowledge.”

Quandary has a new iPhone and Android app that offers the same experience as the web-based game and are available for free. Check out the website for more information and to download the game.

Other interesting news:

Hot Off the Press: UCP News!

Disability Update

  • Large share of ED visits made by adults with disabilities.
    Nearly 40% of emergency department visits in the U.S. involved working-age adults with disabilities, NIH researchers reported in the journal Health Services Research. An analysis of the Medical Expenditure Panel Survey found that the severity of a disability’s limitations correlated with greater use of emergency departments as did lack of access to primary care. Nurse.com (1/2)        
  • Illinois lawmaker will file bill to protect adults with disabilities
    An Illinois lawmaker said he will introduce a bill that would create an Adult Protective Services unit overseen by the state’s Department on Aging, which would be responsible for protecting home-bound adults with disabilities. Gov. Pat Quinn called for reforms to strengthen protections after a report said the state failed to investigate the deaths of 53 adults with disabilities. Belleville News-Democrat (Ill.) (1/2)        
  • Other News
  • Unemployment rate for people with disabilities declined for 4th consecutive month
    Disability Scoop (1/7)        

Assistive Technology

  •  Books for the visually impaired offer support for other disabilities
    Students at Toyon Elementary in San Jose, Calif., who have trouble decoding print are finding help in the form of accessible digital books that were originally created for people who are visually impaired. The books have an operating system that reads the text aloud and offers audio-based reference points. “All of my students have really high comprehension, and they get it,” special-education teacher Tammy Irvine said. “They just can’t access the print.” KQED.org (1/3)        
  • IPad helps Pa. woman find more independence
    Kelly Berta, a 24-year-old Pennsylvania woman with apraxia of speech and arthrogryposis, a disease that affects her muscles, is using an iPad to communicate with people outside of her immediate family. Berta’s speech difficulties led her to develop her own language that her mother understands, but the iPad and its applications allow her to use icons to express her thoughts to others and gain more independence. “This gives her a way to say things in a way that everyone can understand,” Carrie Kane, a speech-language pathologist, said. The Morning Call (Allentown, Pa.) (12/31)        
  • Other News
  • Maine teachers use tablets in lessons for students with disabilities
    Bangor Daily News (Maine) (free registration)/The Forecaster (1/2)        

Transitions

UCP News

  • UCP announces $25,000 innovation contest
    Are you, or is someone you know, an inventor? United Cerebral Palsy has announced $25,000 in prize money to anyone who can create one of the three winning ideas submitted to the World Cerebral Palsy Day’s “Change my World in 1 Minute” contest. Established to raise awareness, and help improve mobility, independence, accessibility, communication or social connections for people living with cerebral palsy, UCP is now seeking to bring the three winning “Change my World in 1 Minute” entries to life. Learn more about the three ideas and how you can get involved.        
  • UCP welcomes new year of growth and progress
    In this month’s “Full Spectrum” newsletter, UCP President and CEO Stephen Bennett welcomes 2013 and the opportunities it will bring for UCP, particularly for the Public Education and Outreach and Life Labs initiatives. Learn more about UCP, our goals for the new year, our affiliates’ success stories, and much more in this month’s newsletter.        

       

My Child Without Limits December Newsletter

The holidays are upon us! Here are some good tips for the holidays and we found the piece about preemies very interesting.

Preemies are Still Facing Severe Disabilities
Despite healthcare and medical advances between 1995 and 2006, virtually the same percentage of babies born premature in those years developed some type of severe disability. The good news is that the survival rate between these years has increased by 11%. While it does seem like we are moving in the right direction, what else can the healthcare industry do to improve the lives of extremely premature babies? To find out more information on this subject click here.

Stay Safe this Holiday Season
Are you feeling overwhelmed this holiday season? From getting the house ready for the holidays to buying gifts for friends and relatives, it is very easy to forget about important safety concerns. Fires cause extensive damage around the world during the holiday season because people forget to keep safety in mind. Here are a couple steps you can take to make sure you have a fun, safe holiday season:
•Water your tree- A dry tree can be a fire hazard, especially with hot Christmas lights wrapped around it.
•Check your lights- double check the sockets and light bulbs for damages and wear as they pose a fire threat as well.
To see more holiday safety tips check out the full list here.

Finding the Perfect Gift
When the holidays arrive, all children anxiously await opening the perfect gift. But finding that gift for a child with disabilities can be intimidating. By taking a minute to consider the child’s abilities and developmental age, you can make an informed choice and provide the child(ren) in your life with pure delight as they open that special toy!

Fortunately, resources are available to help you find that gift. Check out the websites below for tips on what to consider when making that selection:

2012 Toys “R” Us Toy Guide for Differently-Abled Kids
Choosing Gifts for a Child with Special Needs
Infinitec Adaptive Toys Guide

UCP News Brief

This week many of interesting articles have caught my eye, and although I posted a couple of them on our Facebook page I thought I would share them with you all in one place.  A few of these came from the UCP SmartBrief, so as I receive the SmartBrief monthly I will make sure to share it with you on the blog. This is a compilation of the top 10 stories and I thought many of you would benefit from reading them.
So please scroll through and look at a few that interest you!  Please leave us a comment with your opinions!
-Elizabeth Wylie

 

Disability Update

  • Psychiatric group OKs changes to diagnostic manual
    The American Psychiatric Association’s board of trustees approved Saturday the fifth edition of its diagnostic manual for mental conditions. The guide includes Asperger’s syndrome and “pervasive developmental disorder, not otherwise specified” in the autism spectrum disorder category, and introduces a diagnosis of “disruptive mood dysregulation disorder” for children. Bloomberg (12/2), The Wall Street Journal (12/1)     
  • Disability hiring rule would be costly
    The Department of Labor’s proposed disability hiring rule will be costly for companies, writes Sara Cann. A study by the Associated General Contractors of America found that an average-sized construction firm would need to spend about $14,000 annually — for each project site — nearly 30 times the DOL’s estimate of $473. Fast Company magazine (11/2012)     

Other News

Assistive Technology

  • Website supports better library access for students with disabilities
    A new website offers librarians a self-paced online curriculum of videos, games and assessments to help them better meet the needs of students with disabilities. Project ENABLE (Expanding Nondiscriminatory Access by Librarians Everywhere) was developed by Ruth V. Small of Syracuse University’s School of Information Studies after she conducted a survey of school librarians and found that they gave themselves low scores in the area of disability services. School Library Journal (11/30)     
  • Scientists design robots for individuals with disabilities
    Two scientists, Kaijen Hsiao and Matei Ciocarlie, at Willow Garage in Menlo Park, Calif., are developing robots to help individuals with disabilities be more independent in their homes. Still in the design stage, Hsiao and Ciocarlie are working with an individual with quadriplegia, on designing a robot to do basic household tasks, such as getting food from the refrigerator. San Jose Mercury News (Calif.) (free registration) (12/1)     
  • As online videos rise, those hard of hearing seek captions
    Videos are increasingly prevalent on the Internet, leaving out many people who cannot hear or are hard of hearing. Advocates for people who are deaf are seeking regulations requiring websites such as YouTube and Netflix to provide content captions. Some sites already are making content more accessible with automated captioning software. “Access to information has been labeled as a civil right,” said James House, public relations director for Telecommunications for the Deaf and Hard of Hearing. The Washington Post (11/28)     
  • Other News

Transitions

UCP News

  • Progress on the Convention on the Rights of Persons with Disabilities
    United Cerebral Palsy and a broad coalition of disability organizations are working together to get the U.S. Senate to ratify the Convention on the Rights of Persons with Disabilities. This week, Senate Majority Leader Harry Reid called the treaty up for a vote! Learn more about the treaty and join in UCP’s efforts to finally ratify the CRPD.     

United Cerebral Palsy and #GivingTuesday
On Tuesday, Nov. 27, United Cerebral Palsy, the Huffington Post and other organizations observed the first annual #GivingTuesday, a day after the Black Friday and Cyber Monday shopping rushes, dedicated to raising support for philanthropic causes. UCP President Stephen Bennett sheds light on what this support looks like for people living with disabilities and the difference even a small donation can make. Read Stephen’s story and learn more about how to take part in #GivingTuesday.     

Child of the Month: December 2012

December 2012: Wyatt

This month we are celebrating Wyatt, AND we want to share with you his video. In this video you can see his family’s journey and the difference UCP-OC has made in Wyatt’s life.

Please consider making a gift to UCP-OC this season to make a differentce in the life of a child. You can make your gift at www.ucp-oc.org/give.

Child of the Month: November

November 2012: Wyatt

Four years ago, we noticed our sweet 6 month-old son missing developmental milestones, and we began to search frantically for a cause. Our answer was clear, yet one we struggled to accept. Our son, Wyatt, was diagnosed with hypotonic cerebral palsy.

Cerebral palsy (CP) is damage to the brain that affects the overall muscular skeletal system. For Wyatt this presents itself in very low muscle tone as he has difficulties balancing and holding himself up, and in his speech, gross and fine motor skills. Daily life is fatiguing for our son.

With his diagnosis looming over us, we worried would he be able to go to school and have the same opportunities as any child? How do we as a family support him? The years for early intervention are critical, and we didn’t know where to begin.

Jemi and I discovered the search for services is multifaceted and complex. After three years of Wyatt receiving therapy at many different therapy offices we began to see a disconnect. His care was fragmented.  Therapists were not talking to each other about what Wyatt needed, and he began to stagnate and regress in his abilities. Our dreams for him seemed out of reach as we saw the opportunities for early intervention fading because we were going to the wrong places.

With a sigh of relief, last year we found a center where Wyatt receives all the services he needs in one place; a place with clinical and social support; a place that could answer our family’s questions, a place that feels like home. We found United Cerebral Palsy of Orange County (UCP-OC).

One year later, and Wyatt is making progress at UCP-OC! Wyatt receives physical therapy that is helping him to walk confidently on his own, go up and down steps and keep up with those around him. Occupational therapy helps with his play and fine motor skills, such as holding a crayon to color and dealing with changing social environments so he can experience his peers to their fullest and to make friends.   

Today Wyatt attends school and participates in the classroom with his friends. He feels like everyone around him, and as a parent that is all we as can ask for.Without UCP-OC Wyatt would not be making the strides he is, and would have difficulties interacting with other children. Our fears would have become a reality if it was not for the intervention, care and therapy from UCP-OC.

We have new hopes and dreams for Wyatt, and we are seeing these become a reality with the help of United Cerebral Palsy of Orange County. Wyatt has a bright future of more growth.

Will you please join with us in making a gift to UCP-OC, to make a difference in the life of a child, like our Wyatt? Your donation will help make this happen. By sending in your gift or going online at www.ucp-oc.org/give, you can make an impact on a child’s life today.

Thank you for making a difference in the life of our child.

Jemileth & Mark Dipko
Proud Parents of Wyatt

PS: Please give what you can to support a child, a family and a community. Send your donation to UCP-OC today!

My Child Without Limits- September

Celebrating Siblings and 30 Years of Sibling Support

Having a child with a disability can present all sorts of challenges for members of your family including their siblings. The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental or mental health concerns. Their mission is to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues. This is accomplished by hosting workshops, listservs and websites for young and adult siblings, parents and providers.    
 
One key program of the Sibling Support Project are Sibshops- workshops that target young siblings of individuals with special needs. Sibshops are a spirited mix of games (designed to be unique, off-beat and appealing to a wide ability range), new friends and discussion activities. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another – if they are given the opportunity.
 
This September, Sibshops are celebrating 30 years of service to young brothers and sisters across the globe. With almost 400 Sibshops in almost every state and in countries from Iceland to Argentina and Ireland to Japan, there’s much to celebrate! Find a Sibshop near you.
 
For more information about the Sibling Support Project check out their website.

A Focus on Oral Health

To achieve and maintain good oral health, children with disabilities often require a special approach to dental care. The National Institute of Dental and Craniofacial Research (NIDCR) has created a guide for caregivers that explains home-based oral hygiene for their family member with special needs. The guide provides a three step model to a healthy mouth and tips for preparing for your next a dental visit. Check out Dental Care Every Day: A Caregiver’s Guide.
 
The NIDCR has also developed a series of publications, Practical Oral Care for People With Developmental Disabilities, that equips dental professionals with the basic information they need to deliver quality oral health care to people with special needs. The publications present an overview of physical, mental and behavioral challenges common in patients with autism, Down syndrome, cerebral palsy and intellectual disability and offer strategies for providing oral care.
 
With the right information and some adaptation everyone can have a healthy smile!

Submit Your Ideas to Change the World for People with Cerebral Palsy

Last week World Cerebral Palsy Day kicked off the “Change My World in 1 Minute” campaign where individuals with CP, their family and friends suggest what they need to make their life more independent and rewarding. Do you have ideas to submit?    
 
Ideas are posted on the World CP Day website and everyone is encouraged to review the ideas and vote for the concepts that will have the greatest impact on people’s lives. At the end of September the top ideas will be made a reality. Submit your ideas and vote today!

Resouces for Parents & Family

Happy Friday to all our UCP-OC blog enthusiasts!

This post stems from a conversation with a parent, who although is a part of our Parent Email Network was not aware of a number of very valuable resources for a parent with special needs. Below we will cover 3 resources,

  1. Brave Kids (A new resource that is especially for siblings, parents and the child with disabilities.)
  2. MyChildWithoutLimits.org (A website that focuses on early intervention for children ages 0-5.)
  3. CP Research News (A weekly newsletter highlighting new CP research)

Do you have a resource that other parents should be aware of? Share it by leaving a comment on this post or on our Facebook page! If you would like to join our Parent Email Network you can email Kathleen McFarlin at kmcfarlin@ucp-oc.org.
If you would like to receive the UCP-OC newsletter you can sign up on our website or email Elizabeth Wylie at ewylie@ucp-oc.org

1. Brave Kids: www.bravekids.org

Brave Kids, a new initiative of United Cerebral Palsy (UCP), serves children with disabilities and chronic/life-threatening illnesses by providing a support community, information and resources on numerous medical conditions like genetic diseases, autism, cancer, cerebral palsy, etc.

At the heart of the new Brave Kids website and community is a belief that people with disabilities and chronic/life-threatening illnesses should be able to live a life without limits. This site contains two primary components:

  1. An authoritative directory of information of interest to parents of children, ages 6-17,  with disabilities and/or chronic/life-threatening illness; including a special “Kids Zone” section written for children and young adults, ages 6-17;
  2. A social networking community that links parents and caregivers to others raising children with disabilities and/or a chronic/life-threatening illness.

You are also welcome to sign up for a monthly Brave Kids newsletter, at www.bravekids.org

2. My Child Without Limits: www.mychildwithoutlimits.org
This second website we have featured both on our blog and in our Spring/Summer ’12 Newsletter. It has been created by UCP to be an authoritative early intervention resource for families of young children ages 0-5 with developmental delays or disabilities, and professionals looking for a single, trusted, aggregate source of information that relates to their needs and interests. All medical information is reviewed by the My Child Without Limits Medical Advisory Board, a panel composed of doctors in the fields of developmental disability and delay.

Designed to be introduced as a web site, MyChildWithoutLimits.org will offer information in three basic areas:

  • Understand – this section will explain how children develop as they grow and provides parents with easy to understand milestones that they can use to help track their child’s development. This section also provides information about disabilities such as autism, cerebral palsy, Down syndrome, muscular dystrophy, and Rett syndrome.
  • Plan – this section offers guidance on where to go for early intervention services, treatments and therapies, assistive technologies, and working with experts;
  • Act– this section explores issues surrounding disability awareness, advocacy, and lifespan planning.

There is a community section where parents can communicate with each other, ask questions of professionals and service providers, and receive support through the critical period of initial diagnosis. 

The site includes a national Resource Locator where visitors can find local service providers, community organizations and government agencies. All this is intended to inform and support parents/caregivers at a time when too much information can be overwhelming and too little can be frustrating. 

Mychildwithoutlimits.org also has a newsletter that you can sign up for at www.mychildwithoutlimits.org. Also on this site, you can sign up to receive a Welcome Pack, which contains a sippy cup, bib, stuffed animals, and information from the site’s sponsors.

3. CP Research News
A free weekly bulletin of the latest published research in cerebral palsy, compiled and distributed by Cerebral Palsy Alliance. To subscribe to this free weekly bulletin, please complete the online form at www.cpresearch.org/subscribe/researchnews.