November 15 Webinar: “Pituitary Disorders and the Family”

Posted on November 6, 2013 by MaryO

Webinar: “Pituitary Disorders and the Family”
Presented by Jamie L. Banker, Ph.D., Director of Counseling Psychology California Lutheran University
Date: Friday, November 15, 2013
Time: 12:00-1:00 PM PDT 

Seating is limited, register today!
https://www4.gotomeeting.com/register/127537863?utm_source=newsletter_45&utm_medium=email&utm_campaign=webinar-announcement-pituitary-disorders-and-the-family

After registering you will receive a confirmation email containing information about joining the Webinar.
Webinar Information
Chronic illness systemically affects individuals and families, in that the illness impacts the whole system, rather than just the individual with the diagnosis. Health problems can create or exacerbate conflict within a family or support system (Ruddy, Borresen, & Gunn, 2008). This is also the case within families with a family member with an endocrine disorder.

Historically, research on medical illness focused mainly on the identified medical patient, but recent literature shows an ever-growing interest in understanding the physical and mental toll those managing and caring for close relatives with a serious illness or disability (Feigin, Barnetz, & Davidson-Arad, 2008). Family systems theories have influenced this turn, as it becomes clear that focusing on a problem with one family member acknowledges only one part of the affected system.

In this presentation Dr. Banker will talk about what is meant by the “family system,” what is meant by “collaborative’ and “integrated” care, Dr. Banker will identify ways pituitary disorders impact the family system, She will discuss ways family members can positively impact healing and learn what can be the role of a “family therapist” in helping families affected by a pituitary tumor or other endocrine disorder.

Dr. Banker will also talk about her most recent research connecting the early childhood trauma and pituitary disorders.

Learning Objectives
▪ Learn about the primary effects of chronic and/or serious illness on the family
▪ Learn what is meant by the “family system”
▪ Learn what is meant by “collaborative’ and “integrated” care
▪ Identify ways pituitary disorders impact the family system
▪ Learn ways family members can positively impact healing
▪ Learn what can be the role of a “family therapist” in helping families affected by a pituitary tumor or other endocrine disorder

Presenter Bio
Jamie Banker is the Director of Counseling Psychology Masters program and Assistant Professor of Psychology at California Lutheran University in Thousand Oaks California. She is a Licensed Marriage and Family Therapist and has a special interest in integrated behavioral healthcare. She completed a clinical master’s degree at University of San Diego and completed her doctoral degree at Virginia Tech. Dr. Banker was a doctoral intern at Dartmouth College Family Medicine Residency. Dr. Banker has worked in three integrated primary care practices as a therapist and a lecturer. She has published scholarly articles and a few book chapter on integrated healthcare. Now her focus is on training Marriage and Family Therapy students to work in integrated behavioral healthcare sites. She is an AAMFT approved clinical supervisor. Dr. Banker’s research agenda centers on women’s and family’s health. It encompasses topics that are both underserved and burgeoning in the fields of psychology, marriage and family therapy, behavioral medicine, and public health. Dr. Banker’s primary research interests are collaboration between family therapists and medical professionals, family health and training integrated care professionals. These interests all fall under the larger umbrella of improving individuals’ overall healthcare. Her research agenda is focused on decreasing the gap between medical and mental health assessment and treatment. Dr. Banker’s current research is on understanding postpartum depression and disorders of the endocrine system from a biopsychosocial model.

Filed under: Cushing's, Meetings and Conferences, pituitary, Rare Diseases | Tagged: , , , , , | Leave a comment »

Meet Dr. Theodore Friedman in Denver

Posted on November 4, 2013 by MaryO

Theodore C. Friedman, M.D., Ph.D.

Dr.  Theodore Friedman will be back in Denver, Colorado and will host a free patient support group on Sunday November 10, 2013 at 10 am at his sister’s house.

152 S Trenton

Denver CO 80230

It’s in Lowry

Please bring your questions.

Feel free to mention this to other Colorado patients.

Filed under: Cushing's, FAQ, Meetings and Conferences | Tagged: , , , , | Leave a comment »

Prince George’s woman works to raise awareness about rare disease

Posted on September 26, 2013 by MaryO

Lanham resident to speak at Patient Education Day event about Cushing’s disease

By Sophie Petit Staff Writer
stacy

Greg Dohler/The Gazette

Lanham resident Stacey L. Hardy, a survivor of Cushing’s disease, will speak about her experience with the pituitary disorder at an upcoming event at Johns Hopkins Hospital.

Stacy L. Hardy of Lanham described herself as athletic, which is why she became concerned when in 1996 she mysteriously gained 240 pounds that took five doctors 14 years to determine she had a potentially fatal disease.

Now Hardy said she wants to raise awareness among others who may unknowingly have Cushing’s disease, but are unaware of the symptoms and treatment.

It wasn’t until 2010 that Hardy, now 43, was diagnosed with the disease, a rare disorder that causes the body to release too much cortisol, the body’s stress or “fight or flight” hormone, said Gary Wand, a pituitary gland specialist at The Johns Hopkins Hospital in Baltimore.

Excess cortisol causes weight gain, especially in the stomach, extreme fatigue, muscle aches, anxiety and depression, he said.

“I didn’t even know what Cushing’s was. I was ready to just live with [the symptoms],” Hardy said, adding that by the time she was diagnosed she felt so tired she could barely move.

At 5 feet, 4 inches tall, Hardy said she reached 365 pounds during her struggle with the disease.

“We knew something for a while wasn’t right, but I never thought it would be something like that,” said Hardy’s daughter, Paij Hardy, 21, a student at Baltimore City Community College.

Just three out of every one million people are diagnosed with Cushing’s each year, said Wand, who estimates he sees 30 patients per year worldwide.

In 2011, Hardy underwent 16 hours of surgery at Sinai Hospital in Baltimore to remove four tumors from her pituitary gland, located at the base of the brain that controls the release of cortisol.

Today, she is 100 pounds lighter, with the weight still rapidly coming off, and said she is determined to serve as a lifelong support and education source for her fellow “cushies” — others with Cushing’s disease.

Hardy will speak Saturday at the Johns Hopkins Pituitary Gland Center’s fifth annual Patient Education Day, an event to raise awareness about the disease, Wand said.

Since the pituitary gland is the size of a kidney bean, Hardy underwent several brain scans before doctors, who previously suggested she might have leukemia or needed to diet and exercise more, could tell there were tumors on her gland, she said.

Hardy’s experience with delayed diagnosis and misdiagnosis is not unique, Wand said.

Cushing’s is a “subtle” disease, which is difficult to diagnose, and not everyone exhibits the same symptoms, he said.

If left untreated for more than a decade, the disease is fatal, but removing the pituitary gland tumors has proved extremely successful, Wand said.

“I’m evidence that there’s help out there,” Hardy said. “I can move. I can almost run. I can bend over and pick up a box. Oh my goodness, I can dance.”

From http://www.gazette.net/article/20130926/NEWS/130929354/1077/prince-george-x2019-s-woman-works-to-raise-awareness-about-rare&template=gazette

Filed under: Cushing's, Inspiration, Meetings and Conferences, pituitary, Rare Diseases | Tagged: , , , , , , , , , , , , , , , , , | Leave a comment »

2nd Annual Patient Advocacy Summit

Posted on August 22, 2013 by MaryO

RARE

Come join us for our 2nd Annual “RARE Patient Advocacy Summit”
to be held on Friday, September 20, 2013
at The Balboa Bay Club & Resort in Newport Beach, CA.

Register today!

Seating is limited for in-person participation.

Webcast registration available for those unable to attend in person.

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From Symptom to Cure:  The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference

Join Global Genes | RARE Project for a unique and interactive educational experience at our 2nd Annual Patient Advocacy Summit on Friday, September 20, 2013.   There is no charge to participate in this event.

A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step.  The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and to provide the discussion, insights and tools to move down this advocacy path, equipped and prepared.

The summit will offer practical advice, case studies and networking opportunities as we learn from one another.  The goal is to have patient advocates walk away with a better understanding of the challenges they will face and where they can be most effective in helping advocate for their disease/disorder.

Attendees will:

  • Learn how to get started: obtain 501c3 status, write grants, leverage PR effectively and utilize social media to spread your message.

  • Collaboration: Understand how to successfully work with other rare disease stakeholders, patient advocates, the FDA and other government entities.

  • Learn the importance of patient registries, the different types of registries and how advocates can support them.

  • Explore the role of foundations and advocates related to scientific discovery and drug development.

  • Gain a broad understanding of the scientific process, including diagnostic and research methodologies and collaborations with academia and industry.

At the end of this day-long event, each participant will gain perspective on the complexities and questions that need to be considered in order to become effective advocates for the rare disease patients and help advance therapies in the rare diseases we represent.

Who Should Attend:
  • Rare disease patients, caregivers, family members and friends
  • Patient advocates

Whether you are new to this rare disease journey or an experienced traveler, an individual advocate or part of an existing rare disease organization, you will gain value from this event.

Register today!

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Hotel and Travel Information

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Sponsor Information

To become a sponsor or for more information, please contact Nicole Boice.  We look forward to seeing you at this year’s summit.

 View videos from our 2012 event.

Filed under: Clinical trials, Cushing's, Health Care, Meetings and Conferences, Rare Diseases | Tagged: , , , , , , , , , , , , , , , | Leave a comment »

Seminar: Putting Patients First

Posted on August 22, 2013 by MaryO

putting-patients

 

September 30, 2013 | 9:30 am – 2:30 pm
W Hotel, 515 15th Street, NW, Washington, DC

How do patients, providers, and payers know whether health information is credible, accurate, useful or appropriate?

Comparative effectiveness research (CER) has the potential to improve health outcomes by helping people make better-informed decisions. But how do we know that CER will generate information that is useful?

You can help us find the answers by joining us on September 30 for a conversation and symposium featuring a broad range of health care stakeholders—patients, providers, policymakers, payers, researchers, and those who fund research. We’ll focus on an effort led by the National Health Council to create a framework to guide the development of CER, evaluate its results, and assist in communicating the findings to the right audiences.

Be a part of the conversation—register today and add your voice to our efforts to make CER useful. Tweet about it using #useCER.

Filed under: adrenal, Cancer, Clinical trials, General Health, Health Care, Meetings and Conferences, pituitary, Rare Diseases | Tagged: , , , , , , , , , | Leave a comment »

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