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NORD Volunteer Sheds Light on CdLS for CdLS Awareness Day

Norm's family was very fortunate to get a correct diagnosis within a couple of days of Alison's birth in 1989. When Alison was transferred to a top hospital in Providence, RI, "A very knowledgeable geneticist was able to see her symptoms and diagnose her right away," he explained. From then on the family knew that they were going to have a rough road ahead. Norm immediately got started researching ways to help Alison and learn more...

Wrightslaw offers IEP worksheet to keep meetings focused

The team at Wrightslaw has created a great tool for parents hoping to have a successful and productive IEP meeting for their child. The worksheet focuses in on needs and actions that should be taken to address your needs. It also gives great tips, such as:"Make requests in writing. If you make a verbal request, be sure to follow up with a letter. If you have a problem, think about possible solutions to the problem....

Genetic testing Information from "Genes in Life"

If you're interested in learning more about genetic testing, Genes in Life will be hosting a series of spotlights on this topic. Through November and December, the organization, backed by Genetic Alliance, "will feature professionals with experience in all different aspects of whole genome sequencing from medicine to biotechnology to ethics. Readers will be able to pose their questions to our featured experts using our Ask the Experts feature, and answers will be promptly provided...

Special Needs Planning Webinar - 3/19, 3/20

In honor of Disability Awareness month, Protected Tomorrows is hosting this informative, free webinar "5 Things Every Family Needs to Know about Special Needs Planning."To help Protected Tomorrows celebrate, they are hosting a FREE Special Needs Planning webinar for families and professionals. Join their webinar and learn what you need to know about:  · Your Vision of the Future - Think Outside the Box  · Government Benefits - SSI, SSDI & Medicare & Medicaid  · Legal Considerations - Special...

Making Decisions with Parent to Parent Connections

"Informed decision-making is important in many situations in our daily lives, from buying groceries to choosing a plumber, but it is particularly crucial when it comes to healthcare and the health of our children. That is why Family TIES and Parent to Parent have Parent Advisors who share their own experiences, listen, and support your needs."  "Parent Advisors take their experiences to a higher level by helping community, state, and federal agencies develop services to enhance...

Beat the Winter Blues

Studies and other publications (like the one found here in Time) have found that the middle to end of January is the time when people are the most "down." The holidays are over, we spend much more time indoors, the temperatures often drop...it's no wonder people feel so blue. Here are some ways to combat the winter blues and get your new year rolling on the right track: Get moving- Whether it's committing to that new gym...

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Internship Opportunity for Students with Special Needs

"Talented young men and women with disabilities often are denied opportunities for a strong start to their professional careers; the emerging leaders program exists to change that." - Ralph W. Shrader, Chairman and Chief Executive Officer, Booz Allen HamiltonThe following information is provided by the Emerging Leaders Program Web site. The Foundation staff wanted to pass along this information for those who qualify. Be sure to visit the program's Web site directly for more information...

Let your voice be heard - Rare Moments Film Project

We want your voices to be heard. The RARE Moments film project is very simple. Submit video/photo's based on the information we suggest on the website.   This will be a short film, with the end goal being to present it to Francis Collins, Steve Groft, Bill Gahl of the National Institutes of Health (NIH).  The Rare Moments team also hopes to send a copy to the President.   It will also be shown at...

CDC - Public Health Webcast

The Centers for Disease Control and Prevention (CDC) "is the nation's premier health promotion, prevention, and preparedness agency." They have information available on topics from the flu, to workplace hazards, to disabilities. "The Public Health Grand Rounds is a monthly webcast created to foster discussion on major public health issues. Each session focuses on key challenges related to a specific health topic, and explores cutting-edge scientific evidence and potential impact of different interventions. The Grand Rounds...

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Caregiving and the Power of Community

By Hal Chapel, CEO and Co-Founder of Lotsa Helping Hands"At Lotsa Helping Hands, we are committed to shedding light on the needs of caregivers across our country. At some point in our lives, most of us will become caregivers. But the truth is, most of those who care for a loved one do not even consider themselves caregivers. 65 Million Caregivers Over 65 million parents, children, grandparents, sisters, brothers, partners, friends, and neighbors silently go about their...


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