Weekend Schedule at a Glance

Workshops – a Sneak Peek!

Accessing Patient Assistance Programs/ NeedyMeds

hosted by Richard Sagall – About Richard Sagall
Too often people have to make tough choices between taking their medication or paying for other necessities. There is help available for medications and other health costs. NeedyMeds has information on programs that can help. In this workshop attendees will learn about the types of help available, how to access the information, and tips and  tricks to use when applying for them.

Advances in Basic and Clinical Research

Panelists: Carol Feghali-Bostwick, Ph.D.; Thomas A. Medsger, Jr., M.D.; John Varga, M.D.; Virginia D. Steen, M.D.; Robert Lafyatis, M.D.; Richard M. Silver, M.D.
Come listen to a panel of Scleroderma researchers discuss an overview of the Scleroderma Foundation Grant Research Program.  You'll learn about past and present grantees, advances in research, ongoing clinical trials, how research developments are brought to bench to bedside, and future projects and initiatives.  This is a great opportunity to discover how research programs work and the scientific practices that bring us one step closer to finding a cure.

African Americans and Scleroderma

hosted by Virginia Steen, M.D. – About Virginia Steen
Studies have suggested African Americans suffer more severely with scleroderma and its complications. Come listen to a scleroderma expert with a particular interest in treating this patient population.

Are Clinical Trials Right for You?

hosted by Robert Simms, M.D. – About Robert Simms
This session will help remove the mystery surrounding clinical trials. What is a clinical trial? What is a patient's role in a clinical trial? Are there risks? Do patients have a financial responsibility? What is the important role of clinical trials in developing more effective therapies for scleroderma? Learn the answers to all of these questions, and gain a better understanding of how research translates into new treatments for this complex disease.

The Art of Camouflage Makeup

hosted by David Nicholas – About David Nicholas
This session will offer practical tips for minimizing the appearance of telangiectasias and skin color inconsistencies (hyper-pigmentation, hypo-pigmentation) associated with scleroderma skin changes. All ages are welcome, and men are also encouraged to participate.

Be Your Best Advocate: Improving Your Life with Scleroderma

hosted by author Jan Gnall. M.P.A. – About Jan Gnall
This workshop teaches patients how to play a major role in managing their health care. Patients will learn how to prepare themselves for doctor visits by developing their own health care binders. It will also cover full body mobility and functionality exercises. As well as, Raynaud’s Phenomenon triggers, digital ulcer care and skin care treatments.

Biofeedback

hosted by Inna Khazan, Ph.D. – About Inna Khazan
Biofeedback is a powerful mind-body therapy that teaches people to use their minds to regulate their bodies. Physiological processes such as heart rate, blood pressure, temperature, muscle tension, and breathing are non-invasively measured by sensors placed on your skin, and are then displayed on the computer screen. With guidance you can learn to modify your physiological reactions in ways beneficial to your health. Biofeedback is considered to be particularly effective for people struggling with:

• Asthma
• Anxiety
• Chronic pain
• Essential hypertension
• Heart arrhythmias
• IBS (irritable bowel syndrome)
• Migraine headaches
• Raynaud's syndrome
• Repetitive strain injury (RSI)
• Stress
• Tension headaches
• TMJ/jaw pain

And other conditions with physiological manifestations.

Dental Issues Related to Scleroderma

hosted by David Leader, D.M.D. – About Dr. Leader
Scleroderma may contribute to unique problems related to the mouth and the teeth. Managing dental and oral care can be particularly challenging, due to the changes that can occur in your face and mouth. This workshop provides practical tips for managing your day-to-day mouth and dental care and coordinating your care with your dentist.

Employment, Disability and Insurance Issues for People with Scleroderma

hosted by Mark Bronstein, Attorney – About Mr Bronstein
LTD, SSDI, SSI, COBRA, ADA, HIPAA, DET... People with Scleroderma grappling with employment, benefit and insurance issues often feel like they are drowning in alphabet soup.

People with Scleroderma face many dilemmas: “I’m struggling at work due to my symptoms, should I try to get an accommodation from work, or go out on disability? What will happen to my health insurance if I change jobs?  If I have to stop working what cash benefits can I apply for and what should my doctors submit so that I qualify? If I'm already out on disability how long can I keep my health insurance and what will I replace it with when that ends?”

This session will try to provide an overview of the relevant programs and a framework for dealing with whichever of these questions concern you.

For those planning on attending his presentation at our upcoming meeting, Mark has said that he would welcome emails and faxes from anyone with particular areas or topics that they would hope to see addressed in his presentation.  His contact information is Law Office of Mark Bronstein, 288 Walnut St, Ste 120, Newton, MA 02466, tel: 617-244-5551; email: mark@bronsteinlaw.com;  fax: 617-249-0599.

In addition, to his talk Mark has agreed to make himself available after his formal presentation to provide private “mini-consults” to as many attendees as are interested and for which time allows. There will be a sign up sheet at the conference registration table.

For Male Patients Only

hosted by Edward Lally, M.D. – About Edward Lally
The presenter is a doctor who has been interested in scleroderma issues particular to men for many years. He will talk about how scleroderma affects men differently than women, including erectile dysfunction and other issues specific to male patients. He will also speak about the social aspects of being a man living with scleroderma.

Gastrointestinal Issues

hosted by Dinesh Khanna, M.D. – About Dinesh Khanna
People with scleroderma may develop abnormalities of the gastrointestinal (GI) tract. Any part of the GI tract can be involved in scleroderma, including the mouth, esophagus, stomach, and small or large intestine. Improve your understanding of how to treat and manage gastrointestinal problems in scleroderma. Dr. Khanna has developed a questionnaire to assess severity of your GI tract involvement. You can complete it online at http://uclascleroderma.researchcore.org/ and discuss the results with him during the meeting.

Digestive System Involvement in Scleroderma

Hospice and End of Life Care

hosted by Adam Berman, NHA – About Adam Berman
Managing your health means focusing not only on your present health needs, but also on your future health needs. For you or a loved one, hospice and end-of-life planning can be a vital part of managing effective health care. In this workshop, you'll learn the basics about hospice and end-of-life services that will enable you to make educated and informed decisions that benefit you and your family.

How to Cope with Chronic Pain in Scleroderma

hosted by Jim Lemons, Ed.D.
This workshop will show the relationship between stress and medical complications. It will introduce stress in a healthier way. The workshop will focus on how the Behavioral Health Model is an important compliment to the medical model of treatment of all illnesses. Self-help methods will be discussed to give participants suggestions to help them cope with their illness in a more positive way.

Juvenile Scleroderma – Medical Aspects

hosted by Thomas J. A. Lehman, M.D. – About Thomas Lehman
In this session, parents can get the most up-to-date information about some of the unique challenges faced by children with localized and systemic scleroderma. A better understanding of the biological process of scleroderma coupled with the latest medication, therapy, and research information will enable you to be a more informed and effective partner in your child’s care.

Juvenile Scleroderma – Patient Family Discussion

hosted by the Murray Family – About the Murray Family
This workshop gives parents the opportunity to discuss and share their experiences with scleroderma in a welcoming environment. You will also hear from other parents and learn how each family copes with the many obstacles all face when dealing with the disease.

Lung Transplantation

hosted by Hilary J. Goldberg, M.D. – About Dr. Goldberg
Come and hear a local physician discuss lung transplantations in people with Scleroderma. Learn about the research, eligibility criteria, and outcome information.

Making Pharmacy Phun

hosted by JoAnna Harper, PharmD, RPh – About JoAnna Harper
This workshop is designed to give the patient and their loved ones a basic understanding of pharmacy and pharmacology.  This includes defining the terminology used in pharmacy, how some of your medications work through drawings and/or cartoons, and precautions to take with kidney or liver dysfunction.  Other practical topics will be discussed, including: the role your pharmacist plays in your healthcare team, how to get the most out of your prescriptions (and possible ways to save money), common Scleroderma related medication concerns (including pediatric concerns), tips from pharmacists and doctors about your medication, and a chance for you to ask questions.  If you have specific questions about your medication profile or would like it reviewed, please provide them in writing to me after this workshop with your email address.

Maximize Life, Minimize Stress

hosted by Cindy Coney, M.Ed. – About Cindy Coney
Living with chronic illness can be both stressful and frightening. In this workshop, we will explore ways to decrease stress and increase personal well-being to bring our lives into balance. "We will have fun while learning specific tools to maximize life!"

Nutrition and Your Immune System

hosted by Mary Ann Nirdlinger, M.D. – About Mary Ann Nirdlinger
This session will focus on the nutritional needs of people with scleroderma. Come listen to a physician with an avid interest in nutrition speak about how to enhance your health and immune system through nutrition and dietary supplements.

Occupational Therapy/Physical Therapy

hosted by Janet Poole, OT – About Janet Poole
Occupational and physical therapy practitioner will provide exercise programs and suggestions for accomplishing tasks of daily living. Our teachers will demonstrate exercises and the use of assistive devices, alternative movement methods and energy conservation. Audience questions will be encouraged.

The Oral Complications of Saliva Hypofunctions Experienced in Autoimmune Patients

hosted by Athena Papas, D.M.D. – About Dr.Papas
In this workshop, attendees will  learn about the complications of dry mouth and how it affects the teeth and mouth.  Different treatments to remedy dry mouth and its various complications will also be discussed. This is a great workshop for those who live with dry mouth and are looking for the latest information and treatments available.

Osteoporosis and Scleroderma

hosted by Elisabeth Roter, M.D. – About Elisabeth Roter
Osteoporosis affects over 25 million Americans—many of whom are women. Learn about osteoporosis as it relates to scleroderma. This workshop features a discussion about osteoporosis and its manifestations within scleroderma patients, as well as preventative measures and treatments.

Other Manifestations of Systemic Sclerosis

hosted by Janet Pope, M.D. – About Janet Pope
There are other clinical manifestations of scleroderma that are not well recognized and often not ascribed to being caused by systemic sclerosis. These can include thyroid involvement, impotence, bladder involvement, carpal tunnel syndrome, vocal cord infiltration, etc. Although some of these manifestations are less frequent, they often cause substantial symptoms. The knowledge gained from this workshop can provide an explanation for a variety of symptoms you may have.

Pain Management: A Holistic Approach from a Medication Standpoint

hosted by JoAnna Harper, PharmD, RPh – About JoAnna Harper
Pain is the fifth vital sign, and should be treated, just as your other vitals signs, like blood pressure, is treated.  Pain from a chemical and physiological standpoint will be examined, to develop an understanding of how these medications work to treat pain.  Some herbals and alternative therapies will be explained, as well.  A special emphasis on pediatric pain management will also be explored. Pain is what you say it is, so this is planned to be a more interactive workshop.  Come prepared with your written questions on pain management and pain medications.  “The great art of life is sensation, to feel that we exist, even in pain.” ~Lord Byron

Pulmonary Arterial Hypertension in Scleroderma

hosted by Harrison Farber, M.D. – About Harrison Farber, M.D.
Pulmonary arterial hypertension (PAH) can be a serious complication of scleroderma. New therapies offer hope to those who have been diagnosed with PAH. Gain a clear understanding of the biological process of PAH symptoms, how PAH is diagnosed and monitored, treatment options, and the latest research.

Pulmonary Fibrosis

hosted by Robert Lafyatis, M.D. – About Robert Lafyatis, M.D.
Pulmonary fibrosis affects many people with systemic sclerosis. Learn about its symptoms and the different types of   tests performed to diagnose PF and what they mean. This session will discuss treatments and review recent research findings and new medications that are being used to treat this condition.

Scleroderma 101

hosted by Maureen Mayes, M.D. – About Dr. Mayes

Scleroderma 101: An Overview
Receiving a diagnosis of scleroderma can certainly be a confusing and anxiety-provoking experience. What is scleroderma? What are the different types of scleroderma? What can I expect now that I have been diagnosed? These are just a few of the questions you may have. The goal of this workshop is to take the confusion out of the diagnosis by providing a comprehensive overview of scleroderma, the complications associated with scleroderma, and current therapies. This workshop will allow you to become a more effective partner in your care by providing a strong base of knowledge.

Scleroderma and Cancer

hosted by Thomas A. Medsger, Jr., M.D. – About Dr. Medsger
The rheumatologist presenting this session has conducted research on the potential relationship between cancer and scleroderma, and will speak about the need for cancer screening and the effect that cancer therapies may have on scleroderma. Come listen to his recent findings and what implications they may have.

Scleroderma Tests and What They Mean

hosted by John Varga, M.D. – About Dr. Varga
ANA tests and other blood tests, PFT tests, CT scans, nail fold capillary microscopy, rodnan skin scores? What are they and what purposes do these tests, and others serve? Come and learn about the different tests related to scleroderma, why they are done, and what they can and can’t help with. Becoming a more informed participant in your health care can make a difference.

Sexuality

hosted by Elaine Furst, R.N., B.S.N., M.A. – About Elaine Furst
Can you live well with scleroderma and have a good sex life too? The answer is yes! Learn how to compensate for some impediments caused by scleroderma. Our speaker has written and presented on the topic of scleroderma and sexuality and is frank and engaging.

Social Security Administration – Overview & Application Process

hosted by Stephen Richardson, M.P.A. – About Stephen Richardson
Meet with a local Social Security Administration representative to learn about the early stages of the application process. Learn about eligibility benefits, how and when to apply.

Surgical Options for Hand Involvement

hosted by Charles P. Melone, M.D. – About Dr. Melone
Those with scleroderma can experience medical problems specific to their hands such as ulcerations, calcium deposits, decreased blood flow, and joint deformities that require special management. This session will emphasize how the application of surgical techniques can help improve blood flow, promote healing, and improve function.

Talk to Who About What? Discussing your traditional and complementary care with your primary care physician

hosted by Simon Mittal, M.D. – About Simon Mittal
Complementary medicine and/or alternative therapies have become increasingly popular among patients with various diseases despite the ongoing advancement of medical technologies. This workshop will explore the integration of raditional systems of medicine with complementary/alternative therapies, the various considerations for use, and the importance of creating an open dialog with patients' care provider(s) about the possibilities of alternative medicine applications.

Tips for Navigating the E.R.

hosted by Eric Roter, M.D. – About Eric Roter
Visits to the emergency room at your local hospital can sometimes be hectic and emotional experiences. For individuals living with scleroderma, their families, and caregivers, these visits can be especially difficult and worrisome. This workshop will teach you how to prepare for such a visit (as best you can) and what to do during the visit itself.

Yoga for Scleroderma and Assisted Yoga for Scleroderma

hosted by Kathleen Randolph – About Kathleen Randolph

Yoga for Scleroderma: A therapeutic program of yoga poses and breathing techniques selected to benefit people who have symptoms of scleroderma.

This practice consists of a sequence of reclining exercises, standing poses, and breathing and relaxation techniques. All are performed with modifications for physical limitations associated with scleroderma and all can be done while sitting on the edge of or lying on a bed.

This program is available on video and DVD, funded by a grant from the Texas Bluebonnet Chapter, and distributed exclusively as a fundraiser by the Scleroderma Foundation.

Assisted Yoga for Scleroderma A therapeutic program of yoga poses and breathing techniques selected for their benefit to those more severely affected with the symptoms of scleroderma.

This practice consists of a sequence of seated and reclining exercises, with a complete section on exercises for your hands. All are performed with the assistance of a caregiver, with complete instruction for both the individual and the caregiver. All can be done while sitting or lying on a bed. The practice also includes nine guided relaxations to relieve stress and physical discomfort, and to improve circulation and sleep.