SORT BY Relevancy
I have done several shows about Lymphedema and the grassroots efforts to get the Lymphedema Treatment Bill passed. This one came from an original airing of 5/1/10.
"Back in March, we had a show introducting you to the HR 4662 which involves the improvement for health care costs for lymphedema patients. Please join us again today to learn what has been done, what you can do, and what this means to you if you (or someone you know) has lymphedema. We need to get this bill passed in this year's legislation session. We will have Jennifer and Jenny on our show, as well as some other pertinent people that can add more to enlighten about this very important bill." http://www.blogtalkradio.com/oralhistory/2010/05/01/beyond-words-live--understanding-hb-4662
BEYOND WORDS LIVE is designed as a platform for survivors to tell their own stories in their own words.
For more information see http://facebook.com/LymphedemaInTheNews or http://lymphedematreatmentact.org/.
It's that time of year when everyone is on the hunt for the school supply list, the teacher wish list; and, that Teenage Mutant Ninja Turtle backpack that Target had online but can't locate in the store (oh wait, that's MY challenge at the moment).
Seriously, this time of year for many is filled with excitement but for children who learn differently and their parents--there is often very little to be excited about as the fights about homework resume.
According to a 2010 report from the National Center for Learning Disabilities, nearly 2.4 million students are diagnoised with LD and receive special education services in schools.
For parents trying to navigate this educational maze to obtain help for their child, it is often described as the equivilent of attempting to climb Mt. Everest in flipflops.
What do you need to know to advocate effectively for your child? What is an IEP? Who is eligible for a 504 plan? Is there really a difference between a 504 Plan and an IEP? What are the first steps in the IEP process? Does it really speed up the process to get your child tested outside of the school system? What are some types of things you as a parent or guardian can ask to have included in the IEP? We're going to cover all of this and more!
If you have a child that you believe may need extra help in school to thrive then this show is for you!
We will have Licensed Psychologist Dr. Arcella Trimble as our guest to help navigate the waters on Educational Advocacy 101 for Parents and Guardians as well as blogger Karen Wesley Weaver.
Karen's blog, Confessions of An Asperger's Mom (http://confessionsofanaspergersmom.blogspot.com/) has been featured on Mamapedia and is listed on the Top Mommy Blogs http://www.topmommyblogs.com (yes, please go vote for Confessions of An Asperger's Mom).
Dr. Stanley Rockson (of Stanford University Medical School) states that: "Lymphedema is a common disease. Approximately 10 million Americans, for example, have lymphedema secondary to breast and pelvic cancer therapy, recurrent infections, injuries, or vascular surgery." (2010) Imagine, if there were approximately 10 million Americans then, how many more there are now in 2014 (knowing that there is no cure for it as it stands to date)?
For many years, I had key advocates come on my show to discuss various cases and, especially, the aspects of advocating in the legislature. On January 27th, Heather Ferguson (one of those advocates) will come on my show to discuss some updates on those legislative issues being presented.
Today, though, I will open the mic up to patients, advocates, and caregivers especially to tell their stories on how Lymphedema has affected them. We will then share this with legislators to personally hear the many stories typical to illustrate the pervasiveness of this condition.
Please mark your calendars and join us on March 6th at 10a CST to share and/or be better informed about these issues.
The mission of Pan Africa Children Advocacy Watch (PACAW), Inc. is to nurture and develop a different generation of African leaders through the vehicle of ACCESS to a NEW EDUCATION CULTURE AT THE BASIC LEVEL. A type of education that will focus on turning the gaze of the children away from avarice, extortion, selfishness, the vain, and obsession with accumulation of material wealth, and prepare them for leadership that embraces living for a higher purpose.
PACAW will empower these children and young men and women, through education, to subjugate their personal and tribal interests to the interest and well - being of their nations. PACAW is focusing in particular on the education of students in the primary and secondary schools in the neglected and underserved communities in Sub-Sahara Africa. The parents and the local community, including the Parent Teacher Association (PTA), play a central role in charting the course of the future of the children in accordance with their aspirations, and also in the implementation of the objectives of PACAW, Inc. There is strict monitoring and accountability by the PTA, school officials and PACAW, Inc.
The goal is to have a critical mass of a new and different generation of African leaders who will champion de facto development of Africa by Africans. Our hope is that these " NEW " African nations will become productive contributors to the well-being of the human family of nations, and partners with the other developed nations rather than dependents drowning in a culture of chronic beggarliness. PACAW, Inc. believes that intelligence, capability, courage and good character are spread handsomely by OUR CREATOR across all segments of the human race. Thus, with the right type of education, and persistent help from altruistic and visionary mentors, the new leadership in Africa would be able to overcome the Continent's monumental problems.
Tiffany Howe was born with Primary Congenital Lymphedema (Milroy’s Disease). After 27 years of struggling with this ailment, she was given a choice of losing her left leg or undergoing the Charles Debulking procedure. The choice was difficult and very challenging to make. She chose the Charles Debulking procedure and could not have guessed the life-changing experiences which would result. Full recovery took a year and included her learning to walk again. For the next five years, Tiffany used her training as a Registered Nurse to research and study any available information about Lymphedema. Research ultimately led me to the conclusion that Lymphedema patients are in need of support for this currently incurable disease. Support includes education and advocacy. I represent Virginia as part of the Lymphedema Advocacy Group, which is a patient-centered group, raising awareness. Our mission is to get passage in Congress for the Lymphedema Treatment Act.
Come hear her story and more!
For more information, too, please refer to the Lymphedema In The News fb page (http://facebook.com/LymphedemaInTheNews).
Originally Broadcast February 4th, 2014
Writer's Block "Advocacy In Writing"- 3pm to 4pm
Host Tim Pylypiuk along with co-host Bob Delaney take things down a notch and examine writing as a valuable tool for self-advocacy and personal development. Discussion also includes how other artists insert layers of themselves into their stories as a way of lending a voice to those without one.
Radio Drama - 5pm to 6pm "The Silent Affliction"
Synopsis: An autistic teenager re-calls five periods in his life where he was misunderstood, stepped on, and lonely via Five Objects in "The Memory Room"; his mind's central hub.
Originally Written in 1993 by: Tim Pylypiuk
Adapted By: Tim Pylypiuk
Starring: Bob Delaney, Tim Pylypiuk, Erik Estrabrook, Jacynth Geschke, and Maria Illiou
Music By: Pink Floyd, The Doors, and The Cranberries.
Welcome to SNUFA
Self-avocacates come join us you may sign up as indvisuals or group. Self-avocacy groups come be apart of SNUFA Lets make friends your voice is important let it be heard. Special Needs United Friendship and Advocacy and SNUFA Radio is here for you. Become a member today.
SNUFA We disided to Sponsor the 2015 Self-advocacy Conferece/Advocating Change Togeher. We will be there in 2015
Questions to be asked
1. Staff turn over how does it effect you in your daily life.
2. Do you live on your own or a group home are you happy with the sevices that are prvided to you.
3. Do you feel that individuals treat you with respect.
4. Are you listened to when it comes to your needs and wants.
5. If you were going to ask the President a question or topic what would it be.
Video game of Life
Special Needs United Friendship and Advocacy
Po. Box 28428
Oakdale , MN. 55128
Frank Perino - Host
Suzanne Tarazi-Ferraro - Co-Host
INNERSIGHT Means 'FREEDOM'
Advocates for the Disabled
Join us Sunday night with our youngest Advocate, Savio Reyes.
I came across a video produced by Salvio of his experience at the Million Pibble March this past May on youtube and immedietely wanted him as a guest on The Pit Bull Advocate. Call in with your questions and comments!
Phone lines will be open at showtime 347-838-8615
It isn't uncommon for the underdog or child with special needs to be bullied at school. How can parents help their school-aged CHD children if they are being bullied? What strategies work for overcoming bullying? What kind of presentations can parents do to help schools understand the prevalence of congenital heart defects? What can parents do to make sure their children's school are safe for their congenital heart defect survivors? This episode will examine the answers to these questions and more.
Have you ever wondered if your voice counted for something?
Join host Tami Neumann as she sits down in conversation with Kimberly Poston Miller, author of the book Living with Juvenile Arthritis: A Parent's Guide and JA Advocate. Tami and Kim will talk about the importance of being an advocate for your cause and the best ways to lend your voice to the cause.
Kim will discuss her time in Washington DC, to advocate for Juvenile Arthritis and other ways she has been advocating since the diagnosis of her children with JA.
Catch up on Kim's book by following her blog here.
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