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Dr. Ilene Sussman, Executive Director of the VHL Alliance, based in Boston, Massachusetts, speaks with Mike and Joyce about the celebration of Rare Disease Day being co-sponsored by the Alliance and the Massachusetts Biotechnology Council (MassBio), at the Massachusetts State House in Boston on February 28, 2014, 11-12 AM.
The VHL Alliance is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by Von Hippel-Lindau (VHL).
von Hippel-Lindau (VHL) is a genetic form of cancer. VHL patients battle a series of tumors throughout their lives. The VHL gene is involved in many other forms of cancer. Curing VHL is one step closer to curing cancer!
The Massachusetts Biotechnology Council (MassBio) is an association of more than 600 biotechnology companies, universities, academic institutions and others dedicated to advancing cutting edge research. MassBio is the leading advocate for Massachusetts’ world premier life sciences cluster. “We drive innovation by creating a forum for the biotechnology community to come together, educating the public and policy makers, influencing public policy and advancing the economic interests of individual companies, as well as the sector as a whole.”
The Rare Disease Day event will take place Friday, February 28, 2014, 11-12 in the morning, in Nurse’s Hall at the Massachusetts State House, on Beacon Hill in Boston. For more details, see http://www.massbio.org/events/calendar/2305-rare_disease_day/event_detail
Healthcare Whisperer welcomes back Mary Elizabeth Parker to the show. She is here to discuss her recent trip to Washington, DC to be a part of Rare Disease Week. She was involved in many events including meeting with several congress people. She will be discussing upcoming legislation, research and what is happening at the NIH Rare Disease Department.
Mary Elizabeth is dedicated through her work with U R Our Hope, to helping families and individuals finds answers to undiagnosed problems. She is also a voice for those who are suffering with rare diseases and need assistance getting what they need from the healthcare system. She is an inspiration for many including me!
Be sure to tune in to get the latest updates and hear the moving and inspiring stories of those Mary Elizabeth works with.
Mike and Joyce speak with Gloria in Ireland. She shares her family's adventure in achieving a diagnosis of her daughter first for a brain tumor, and then for a rare syndrome, von Hippel-Lindau (VHL) which has implications for other kinds of tumors as well.
We learn how her persistence was essential in getting to a correct diagnosis and appropriate treatment for her daughter, who is now doing very well. There are lessons for all of us in trusting our own instincts, and in knowing what is normal and what is unusual in your own family members. The doctors bring their knowledge of the science and of sorting out what diagnosis might be right. The patient and the family bring their description of the symptoms the sequence of events, and the pattern of when the symptoms are better or worse. It is only through this partnership that we can get to a diagnosis, especially of a rare disease.
After introduction and disclaimer, Dr Synonymous (aka, Dr Jonas) comments on recent events with the death of his father in law. Next he discusses a rare disease: fibrodysplasia ossificans progressiva (FOP). He follows information about it through the IFOP web site/ Facebook site, then to NHGRI and OMIM with in depth comments from those sites.
He notes a feature about Behcet's Syndrome on the NHGRI site before speaking of National Rare Disease Day, February 28th. He then reviews Patient and Health Care Blogs including Dr Fat to Fit, Final Trick and Medical Mojave. Dr Kenny Lin writes about recent medical studies on Common Sense Family Physician.
Remember National Rare Disease Day.
Patricia Weltin, Founder and CEO of Rare Disease United, will speak with Mike and Joyce on Thursday, January 23.
Patty's two daughters have a rare disease called "Hypermelanosis of Ito" (HI). She is not looking to educate you about HI. Instead she wants you to know that nearly 25% of the United States is affected, directly or indirectly, by some rare disease. Each individual rare disease may be rare (affecting less than 1% of the population), but the experience of having a rare disease is not rare at all. And each individual or family with a rare disease encounters the same hurdles over and over, throughout the country and the world:
We all struggle:
<li>to achieve a diagnosis</li>
<li>to find a doctor who know anything about our rare disease</li>
<li>to find an appropriate treatment for the condition</li>
<li>to find others who understand and can provide coaching</li>
<li>to encourage drug development to alleviate or cure our disease.</li>
Rare Disease United focuses on raising awareness among the general public in Rhode Island and Massachusetts, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another.
Come listen to the great plans Patty has for celebrating Rare Disease Day at the end of February 2014, and learning how you can join together with this energetic group and with other such groups worldwide.
Brian Yusem ND's show will give the listener the Underlying Causes of All Disease.
Dr. Brian Yusem ND. has had a career of over 20,000 patients with over a 95% Success Rate, over 2,000 live radio shows as an Investigative Reporter on health and nutrition therapies. He has interviewed some of the most prolific Doctors, Scholars, Teachers, Professors, Olympic Athletes. He loves to give the audience a realistic approach to self empowerment.
This is a starting point for a circular vision of how diseases are created and what to do about them.
Brian Yusem is both doing a radio match with a book series for purchase on Amazon.
The book series will give you total control of your destiny, both in the healthcare field and manefesting your goals.
Brian Yusem's site is the OrganicWellnessNetwork.com where he has many articles for you to follow, as well as, many fun and interesting videos on health and fitness.
He also has BrianYusem.com
AM360 EDITION - 08-28-14 Radio Host, Imam Yusuf Ramadan discusses the "so-called" ISIS theme to "dominate the world" /// James Foley/// other issues in current events. Radio Audience responds...
Produced by William Kareem -
Listen to MUSLIM AMERICAN RADIO BROADCASTING every Saturday Morning from 3am-6am ON WPAT930 on the AM Dial (NYC) or www.wpat930am.com
A NEW DAY FOR AL ISLAM COMMUNITY RADIO - Everyday at blogtalkradio.com/anewdayforalislam
Call 213-813-0356 to join the conversation.
TRUE HUMAN RADIO-ADAM,VOTP-S.O.S. STRATEGY OF SUCCESS-A MESSAGE OF CONCERN-A NEW DAY FOR AL ISLAM IN AMERICA-THE JUMAH KHUTBAH-CRITICAL DISCOURSE.
When a family member receives a diagnosis of dementia, you take on the resposibilties of caregiving and communicating. You share the diagnosis, you educate family and friends about the diagnosis.
Today, Claire Day, our dementia care expert, will help us talk about a diagnosis with family and friends. She'll also share tips on how to continue the education during the disease process and declines.
Mary E., will be joined by Michael Urbano and Cheryl Savage to expose the reality that is plaguing millions of Americans annually. This unknown epidemic is wreaking havoc on unsuspected victims. Tune in to hear the start of a 3 part series. Be informed, be forewarned.
Michael Urbano I am 34 years old and went misdiagnosed with Torticollis. A.K.A. Cervical Dystonia. Which is a neurological issue that keeps your head stuck in either a left, right, up, or down position. Fighting it is nearly impossible. You become a prisoner of your very own body. The next step neurologists told me is Deep Brain Stimulation. Brain surgery procedure to fix the neurological issue, tremors, spams, etc... January of 2014 I discovered that I have Lyme Disease. Which is causing my neurological mumble jumble. My issue with Lyme Disease is doctors can get in trouble for treating it.
Cheryl Savage lives in Portland Oregon and is a mother of twins. After years of battling back against multiple medical issues, it was discovered that she is infected with lyme disease and multiple viral/bacterial infections that are passed through tick bites along with the lyme infection. She wishes to expose her nightmare and hopes that in doing so others will be able to get the help they need.
Tonight's Politics w/ Ric Rare (Portland Observer), DeeAnna Lopes (Florida), Will Hanna (Baltimore) and LaQuay Juel (NJ, Obsidian News). Topic, once again, is Ferguson: The Aftermath. National Discussion on Ferguson: Civil and Human Rights; behind the scene violence, arrests, and hospitalizations. Timeline on Mike Brown's murder. The autopsy report stated there were 6 shots, including two to the head - one that actually into the top of his skull. Video tape. Mainstream media's contribution to racial profiling, homicide justification. Role of social media. Wakeup call for Black America. The militarization of cities across America, like Baltimore, as noted by Baltimore Mayor Stephanie Rawlings-Blake on Meet The Press yesterday. Also, breaking news about resignation of Dick Cologne in Baltimore's Park Heights Community.
The Metaphysical Edge with Bee Delozier returns to GGMRadio every Thursday at 11 AM Central.
TODAYS SPECIAL GUEST IS RICH PRICE ON HEALING YOUR WORLD WITH HYPERPHYSICS AND RADIONICS. Hyperphysics and Radionics are cutting edge technology to remove pathogens and dis-ease from the body. Rich Price will be offering healing services via use of Hyperphysics Solid State Tools Protocol and Radionics. Four minute Lymes Disease cure! Call in for this special test with Rich Price!
Join Bee and her special guests every Thursday as they discuss the many subjects, trending news and interests in the metaphysical arena.
Dr.Nebkheperure teaches on...
"NECROSIS: The Disease That Crippled The Minds of Blacks & Africans"
For more information on visit www.nebkheperure.or
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