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Fran Mott has been the Chapter Leader in Michigan for the VHL Family Alliance since 1994. What that means is that she is in charge of taking care of people with von Hippel-Lindau throughout Michigan.
Von Hippel-Lindau (VHL) is a genetic cancer syndrome, caused by one tiny misspelling in one gene, the VHL gene. People who carry this alteration are at increased risk of having one or more tumors in a variety of places in the body. There is currently no magical cure, it's all about watching out for issues, finding them early, and getting the right treatment at the right time.
Fran has worked with physicians at University of Michigan Medical Center and other hospitals throughout the state to become more aware of VHL, diagnose it earlier and more accurately, and help people manage their health. The University of Michigan has created a Clinical Care Center for VHL, part of the CCC program of the VHL Alliance.
Fran is retiring this year after nearly 20 years of volunteer service to her neighbors throughout the state. Joyce speaks with Fran about her experience as a patient herself, a mother, and a volunteer in service to others with this rare disease.
The VHL Alliance will hold its Annual Meeting September 21, 2013, in Ann Arbor, with a dinner September 20 honoring Fran and Dr. James Montie of the U of M.
For information or to register for the meeting, see http://vhl.org/meetings
We focus a lot on response in EMS. Our response allong with our training can effect patient outcomes. But what about when response is the focus without equal attention to training. Getting there is only part of what we do, yet is often the one marker that is looked at when it comes to a patients outcome.
This week we talk about EMS response, call types, training and how they reflect on patient outcomes.
Does the 8-10 minute response have a positive impact or is it better training and equipment?
Join us for this discussion.
Faaantastic! FDN Support Talk Radio is here for you to get information that matters most! Get together with Reed Davis, FDN Mentors and Special Guests. Submit questions ahead of time, or better yet, call in live and join in the discussion. This is your chance to pick what's left of Reed's brain to improve your understanding of lab interpretations, case management challenges, and business issues you may be facing.
Joyce speaks with Anne Wilson, CEO of Kidney Health Australia (kidney.org.au), an organization dedicated to helping all Australians maintain good kidney health throughout their lifetimes.
While traditionally focused on kidney diseases that reduce kidney function and may lead to dialysis and transplant, several years ago the organization undertook also to support people with kidney cancer. It now works not only for awareness of issues that may degrade kidney function, it works too to raise awareness of the early signs of kidney cancer and connect people diagnosed with any of these issues find the help they need.
In addition to her work with Kidney Health Australia, Anne also serves with Joyce on the Leadership Team of the International Kidney Cancer Coalition (IKCC.org), an international network of patient support and advocacy organizations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support and assistance to national and regional non-profit kidney cancer organizations. All organizations are welcome to participate.
Oscar Jimenez-Solomon, MPH, Research Scientist & Research Coordinator, NYS Center of Excellence for Cultural Competence, NYS Psychiatric Institute
Peggy Swarbrick, PhD, FAOTA, Wellness Institute Director, Collaborative Support Programs of NJ, Associate Professor, Rutgers University
Poverty and dependency are barriers to the recovery and rehabilitation of people seeking mental health recovery. Clinicians, peer providers, consumers, families, and community services must work together to help individuals achieve financial stability and wellness.
This talk presents lessons of the Collaborative Support Programs of NJ (CSP-NJ) in providing financial services for people in mental health recovery and examples of asset-building services available in many communities. It also describes key components of a peer-facilitated economic empowerment intervention being developed by the NYSPI Center of Excellence for Cultural Competence in partnership with the Wellness Institute at CSP-NJ, the Mental Health Peer Connection (Buffalo, NY), Baltic Street (Brooklyn, NY) and other organizations providing peer and asset-building services, such as the New York Association of Psychiatric Rehabilitation Services (NYAPRS), the United Way of Buffalo and Western NY, and the National Disability Institute.
For more information about the Peer Supported Economic Empowerment (PSEE) project, please contact Oscar Jimenez-Solomon at: email@example.com.
For more information about CSP-NJ's financial services and Word Wellness Newsletter, please contact Peggy Swarbrick at: firstname.lastname@example.org
For more information on the Center of Excellence for Cultural Competence please go to http://nyculturalcompetence.org/
Tonight we welcome back to the show, Dr. Lorna Speid who works in the pharmaceutical industry as a regulatory affairs and drug development consultant. We will be talking about the role of the PI (Principal Investigator) in clinical trials.
After working in the pharmaceutical industry for many years, Dr. Speid saw a need to provide information to patients about clinical trials that would allow them to be empowered enough to ask the right questions before and after entering clinical trials. She wrote the book Clinical Trials: What Patients and Healthy Volunteers Need to Know, to accomplish this. It was published by Oxford University Press in 2010.
Oxford University, the publisher of the book has agreed to provide Help 4 HD with a donation every time anyone using the Code HELP4HD154 in purchasing a copy of the book. The link for purchasing the book is http://global.oup.com/academic/promo/32990/?cc=gb&lang=en PROMO CODE: 32990. This is a book that will provide information on the development of new treatments. Education about this process is critical for anyone that is interacting with the process, whether as care giver or as patient.
She is the founder of a non-profit called Rare Diseases Patients First! This organization is planning to provide education to patients with rare diseases about the clinical trial process. This education will be provided free of charge. We will provide more information about these educational internet-based meetings, as soon as they are ready to be rolled out later this year. Dr. Speid advises companies on the development of new treatments for rare diseases.
Joing internationally recocgnized, potty training expert, Jamie Glowacki, for an hour-long, all questions all answers show. Whether your child is stuck somewhere in the process, showing resistance, or you simply want to share a sucess, you can call in live and chat with Jamie.
As always, we love live callers but you can also write in a question to our Facebook page, if you can't make it live.
Well it seems that another "microwave hero" has popped to the top for Republicans. It looks like Dr. Ben Carson is taking a good look at running for the nation's top spot. Although Dr. Carson suffers from some of the very same lack of experience that Republicans contiinue to complain the the current president does not have. Dr. Carson is a doctor, a brillant Neurosergeon, but has zero political experience. As far as we know, he has never run a business, although in his position at John-Hopkins he was responsible for a staff of people.
There is little doubt that Dr. Carson is an amazing man with an amzaing story, but is that enough? We will bat it around today. Feel free to call and give us your thoughts on the matter.
Thank you to The Red River Chronicle for being a patron of the conservative arts for this broadcast. Visit The Red River Chronicle at www.theredriverchronicle.com
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TOC RADIO - TUESDAY, SEPTEMBER 23, 2014
Tune in for another TOC 10 FIGHTER INTERVIEW with up and coming fighter AUSTIN COOPER.
`•TOC•´ ° Once you go, you’ll know °
•TOC 10• ? •SAT. SEPTEMBER 27TH 2014•
• George Wythe High School • Wytheville, VA
TOC 10 TICKETS ¦? www.titansofthecage.com
Cooper will battle in the middleweight division against TOC DEBUT FIGHTER Jeremy Caviness. Cooper is 1-0 and comes into the fight after a short layoff from training to fight Jeremy Caviness fighting out of (Backyard Brawlers & Decimation MMA) . While Jeremy Caviness is new to the cage, he has all the tools to bring war with him to TOC 10. Both men are serious in their preparations for this upcoming fight and are anxious to answer the bell.
This looks to be the makings of an evenly matched and entertaining fight for our TOC fight fans. Don't miss it...come out and show these two warriors some support....
Are you ready? … TOC 10 will explode on Saturday, Sept. 27th in Wytheville, VA at George Wythe HS. Prelims start at 6 pm...main card starts at 7 PM. If you are a TOC fan or simply love the excitement that MMA delivers … this is one event that you WILL NOT WANT TO MISS...
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