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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/.
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.
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
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).
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
Junious Ricardo Stanton speaks with Jarrett L. Carter Sr. the founding editor of HBCU Digest who is a stuanch advocate for Historically Black Colleges and Universities. He is also the founder of HBCU Radio and The Center for HBCU Media Advocacy. Jarrett is a contributing writer for the Huffington Post and a frequent spokesperson for HBCUs on the MSNBC series about HBCUs and other media outlets. Jarrett shares how he got started, why he is so passionate about HBCUs and he discusses the recent HBCU Digest sponsored Media Summitt Countering the Crisis: Media Strategy and HBCU Survival which took place at Dillard University in New Orleans Louisianna Jlu 10-11, 2014 .
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.
Stay in the KNOW with Conversations In Care by signing up for the newsletter TODAY!
Join us as we discuss TRUTH behind statistics and the target of the youth. Also, introducing YOUNG WORLD along with B from Fathers Advocacy.
Lets questions everything, educate ourselves and teach others.
Congenital Heart Defect (or CHD) Awareness is an extremely important issue. Congenital heart defects (heart defects present at birth) are the #1 Birth Defect. While a commonly reported statistic is 1 in 100 babies are born with a heart defect, that statistic does NOT include the most common CHD – bicuspid aortic valve. In fact, that statistic does NOT include a number of CHDs. That means that more than 1 baby in 100 is born with a CHD. Congenital heart defects also kill more babies than any other birth defect. In the United States there are 40,000 babies born every year with a CHD. There will be one million babies born worldwide with a CHD and 100,000 of them will not live to see their 1st birthday. While these numbers are staggering, there are still many people who are unaware of the fact that babies can be born with CHDs. We must raise awareness to stress the importance of funding research to prevent future generations of children from dying and suffering from this birth defect.
Come hear Heather Ferguson provide us with some updates about THE LYMPHEDEMA TREATEMENT ACT via my radio show called BEYOND WORDS LIVE. She'll provide the latest and greatest on what is happening with the Hill on our Bill. Invite all your State Advocates to attend, all Lymphedema patients to attend, your LE physical therapist to attend, as well. We need all the voices that we can get!
For a little insight, Heather passed an email out on January 15th which included this announcement -- LYMPHEDEMA TREATEMENT BILL is now up! She writes "All our hard work and preparation over this past year has come to fruition today! This morning the Lymphedema Treatment Act was introduced into the 113th Congress (bill number HR 3877) by our lead sponsor, Rep. Reichert (R-WA), and co-leads Rep. Lance (R-NJ), Rep. Blumenauer (D-OR), and Rep. Braley (D-IA)."
For more discussions about these issues go to Lympedema In the News on facebook - http://facebook.com/LymphedemaInTheNews - or, see the website - http://www.capwiz.com/lymphedematreatmentact/home/. See also this article - http://reichert.house.gov/press-release/reichert-introduces-critical-legislation-improve-healthcare-lymphedema-patients
My guest will be Kristina Zimmerman who is the 2014 Student Chair of the AAFP National Conference of Medical Students. This year's meeting will take place August 7-9, 2014 in Kansas City and the hashtag for the meeting is #AAFPNC. During this meeting, we will be talking about this year's meeting, Family Medicine Advocacy, and whatever else comes up. Hope you can join us!
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