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The Topical Hour, Rett Syndrome Zohar Levitan speaks with James Westgate and Duncan Miller about Rett Syndrome. This syndrome affects about 1 in 10,000 girls in the first 2 years of their lives and requires that the girls receive 24/7 attention in order to be able to function in a minimal amount. Our guests will tell us about the syndrome, how it has affected their lives as a family and what is being done to try and cure this. We will also hear some ways in which the parents are he
In recognition of Rare Disease Day February 28, 2011 Tara welcomes guest Syndi Ridenour Knowlton and Paige Nues, Director of Family Support for the International Rett Syndrome Foundation.
In an effort to bring awareness to the rare disease please tune in and learn about Rett Syndrome and the work that the foundations is doing.
A representative from Ruby's Rainbow will be with us to talk about their program designed to "grant scholarships to adults with Down syndrome who are seeking post-secondary education, enrichment or vocational classes." They'll be presenting at the National Down Syndrome Congress convention in Indianapolis and we'll get a "sneak peak" at what they have to offer! Find out more about Liz and Tim Plachta, their beautiful daughters, and why they created this wonderful opportunity for adults! Check out their website to see some of the past recipients!
You can also find them on Facebook and Twitter!
Attorney and bioethisist Mark Leach will be talking to us about his upcoming presentation at the National Down Syndrome Congress Convention: "The New Era of Prenatal Testing: Answering Questions About the New Age of Genetics." If anyone knows the most current information on this topic it's Mark! Join us as we talk about his important work within the Down syndrome community and hear his thoughts about what we, as parents of adults who have Down syndrome, can do to help.
From an article by Maureen Wallace in AllParenting:
"Mark is dogged in his passion not only for his own daughter but for all people with Down syndrome," says Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital.
You can also find Mark on Twitter and LinkedIn
We're excited to have Sujata Bardhan, Ph.D and Melissa Parisi, M.D., Ph.D. from the Eunice Shriver Kennedy National Institute for Child Health and Human Development (NICHD), National Institute of Health (NIH) visit us to talk about DS-Connect the online research and data portal that launched in September of last year. We'll find out where you can connect with them at the NDSC conference and talk a little bit about their work so far. Drs. Bardhan and Parisi are very open to hearing your questions and concerns as parents/guardians and have already started a dialogue with us on The Road about how it can help the adult population. Join us to get a preview of what's coming up in Indianapolis and feel free to call in with questions or post them on our chat board while we're live on the air.
You can check out the registry site here.
Getting ready for the NDSC conference in Indianapolis? We're talking to some of the presenters and exhibitors who will be focused on adult issues. Our first scheduled guest is Marianne Marts from Joey's Ups with Downs. Marianne is co-guardian of Joey, her older brother who has Down syndrome. She'll be talking about her presentation scheduled for Saturday called "Calm to Crisis at the Flip of a Switch! How to Prepare for a Family Emergency Even if They "Don't" Want to Talk About It!" Marianne will also be in the exhibit hall with her book "Will You Be My Friend" that features his brother Joey.
Join us for a preview from this highly involved sibling who knows her way around the advocacy world and can help us understand the perspective of sibling guardianship.
On The Curepanel Talk Show this week, we launched a new talk series on rare cancers/diseases, discussing Lynch syndrome and its Emotional implications with Megan Myers, a genetic counselor at UCSF, and Georgia Hurst and David Dubin who are Lynch syndrome survivors and advocates.
Lynch Syndrome is characterized by the inheritance of genetic defects in the MLH1, MSH2, MSH6 and PMS2 genes, and predisposes families to developing colorectal cancer and endometrial cancer in women.
The panel discussion educated the audience about the genes linked to Lynch Syndrome and their association to other diseases, including the diagnosis, treatment and management of Lynch syndrome. In addition the panelists emphasized the importance of seeing a genetic counselor before and after testing, who can help deal with the emotionally taxing diagnosis of the disease, explain about its implications and screening measures, provide information about support groups, and also encourage other family members to get tested.
The Cure Panel Talk Show Team thanks the panelists and the audience for a very informative discussion.
For details of our upcoming shows please mail email@example.com.
We'll continue Saturday's conversation about what we're looking forward to learning from the National Down Syndrome Congress convention and what we need from our new community focused on caring for adults who have Down syndorme. This is your turn to give us input on what features you'd like to see, topics you'd like to discuss, or resources you'd like us to try to get. We'll also talk about all of the great guests we have lined up for the week leading up to the conference!
We hope you'll join us !
Tune in on Tuesday June 3, at 8 PM CDT (What is Central Daylight Time?)
This week we will be discussing the debate surrounding Shaken Baby Syndrome (SBS), with our guests Audrey Edmunds and Attorney Jen Fitzgerald. New scientific evidence has come to light in recent years challenging the validity of SBS, calling into question thousands of convictions that may have been secured on flawed science.
Audrey Edmunds was wrongfully convicted in 1996 of reckless homicide for the shaking death of Natalie Beard, a 7-month-old infant she was watching while doing home daycare. Audrey was sentenced to 18 years in prison.
In 2006 the Wisconsin Innocence Project, took on Audrey’s case. New scientific evidence was emerging that was not available at the time of Audrey’s trial that supported her innocence.
In January of 2008, the Wisconsin Court of Appeals ruled that "a shift in mainstream medical opinion" had cast doubt on whether shaking could have caused the brain injury that caused Natalie Beard's death, leading the court to order a new trial. The District Attorney's office dropped the case, freeing Audrey after serving 11 years in prison for a crime she did not commit.
This is a special blog talk radio/ podcast dealing with God's heart on Rett Syndrome and other illnesses and problems in life. It is to include Minister Shad Bailey saying a special prayer for the children with and famailes of children with Rett Syndrome.
We will be discussing why women may be suffering from what's known as Rushing Woman's Syndrome. It is something that has effected women that are overworked, under paid, and under valued. This article says that this is based upon women juggling many hats. These hats include, raising children, working outside the home, running a business, driving your kids to their activities and being addicted to social media. The second topic is about the story regarding the Stockton California criminal that has women swooning over him.
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