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Patients and Families
For Those Affected By Wilson Disease

 

The Big WOW, Nationwide Walk for WD

Created by the Simpoulos Family

The Details  > Watch the Video

  • When: October,  2017
  • Where: Various cities across the United States and Canada
  • Who: You and Everyone you know!
  • Why: To bring awareness and funding for WD
  • What: A walk- but not a standard, run-of-the-mill 5 or 10K.

There are two ways to participate: 1) sign up for a walk in a city in your region or 2) sign up as an individual and have your own walk. There is no prescribed length for the walk and we wanted to keep it simple by holding it in places where permits were not needed which add to the complexity and the cost. For example, our family is holding one at a park near our house and we will be walking 1-2 miles culminating with a picnic afterwards. We also will be drinking La Croix sparkling water, which is generously donating their water to every venue!

The walk is, as far as we know, the first of its kind. Our website is www.thewilsonsbigwow.com and you can register directly on the site. There are 17 cities participating across the nation including Canada. At the end, we will be posting pictures from every venue, coast to coast for people to see. We would love to have a big turn out in support of this great cause, plus it will be a fun and exciting way to connect us all!

 


2016 ANNUAL CONFERENCE

EXCITING NEW ADVANCES IN THE WORLD OF WILSON DISEASE SATURDAY, 0CTOBER 22, 2016

This year’s Annual Conference and Support Meeting will be held in Orlando, Florida at the Crown Plaza Orlando Downtown 304 West Colonial Drive Orlando, Florida 32801

Conference Registration

Registration for the conference is free for members, $60 for non-members. The conference banquet is $30 for members, $50 for non-members. To check your membership status, please log into your account at https://wda.donortools.com. This year’s registration will be completed online beginning on July 1, 2016 at https://www.evenbrite.com/e/2016-annual -conference -exciting-new-advances-in-the-world-of-wilson-disease-tickets-25860932746 If you are unable to register online, please call the WDA office at 866-961-0533. All registrations must be received by October 8, 2016.

Hotel Reservations

A block of rooms has been reserved at a group rate of $115/night plus taxes at the Crown Plaza Orlando Downtown, 304 West Colonial Drive, Orlando, Florida 32801. Reservations can be made by calling 1-888-295-7563. Group attendees should request Wilson Disease Association.

Reservations must be made by September 20, 2016 to receive the Group Rate.

Event Sponsorship Opportunities


2014 Annual Conference Highlights

“Neurological manifestations of Wilson diseases”
Matthew Lorincz, MD, PhD Associate Professor, Neurology, University of Michigan, Ann Arbor, Michigan

“Low copper diet for Wilson disease”
Matthew Emilie Klemptner, MS, RD, Clinical Dietician - University of Michigan, Ann Arbor, Michigan. Patricia Paulin, RN, Wilson Disease Nurse Coordinator, PRELiver Transplant RN - University of Michigan | Michigan Transplant Center, Ann Arbor, Michigan

“Wilson disease research and care looking forward”
Fred Askari MD, PhD. Associate Professor of Internal Medicine, Director of the Wilson Disease Center of Excellence - University of Michigan, Ann Arbor, Michigan. WDA Medical Advisor

“Wait, can I ask you something? Communicating with your healthcare professional”
Eva Margot Kant, LCSW-R, Licensed Clinical Social Worker; Adjunct Professor – Silberman School of Social Work, Hunter College and Columbia University Graduate School of Social Work, New York, New York

“Gene therapy for Wilson disease”
Olivier Danos PhD, Senior Vice President Molecular Medicine, Synthetic Biology and Gene Regulation at Kadmon Corporation, New York, New York

“The story of Gluzin (zinc gluconate)”
John Wu, President & CEO, extreme V, Troy, Michigan

“Molecular Genetic Testing: Wilson Disease”
Marwan K. Tayeh, PhD, Division of Pediatric Genetics, Metabolism and Genomics, School of Medicine, University of Michigan. Ann Arbor, Michigan

KEYNOTE: “Some Ruminations on Zinc, Copper, Wilson's Disease, and Alzheimer's Disease”
George J. Brewer, MD, Sellner Emeritus Professor of Human Genetics, and Emeritus Professor of Internal Medicine - University of Michigan, Ann Arbor, Michigan


2013 International Workshop

Whitepaper: HUMAN DISORDERS OF COPPER METABOLISM: RECENT ADVANCES AND MAIN
CHALLENGES


2010 Annual Conference Highlights

“Examples of Treatment Failures in WD and Eventual Outcomes”
Fred Askari M.D., PhD. Associate Professor of Internal Medicine, Director of the Wilson Disease Program, University of Michigan, WDA Medical Advisory Committee
Dowload the PowerPoint Presentation

“Liver Transplantation for Wilson Disease: When is it indicated and how do we avoid it?”
Richard Green, M.D., Professor of Medicine, Chief Division of Hepatology, Co-Director of the Wilson Disease Clinic Northwestern University Feinberg School of Medicine, Chicago, IL
"A Patient Perspective: My Journey in Medication Compliance"
Pamela Meadows, R.N., BSN, M.A., Veteran’s Administration Medical Center, Denver, CO.
Dowload the PowerPoint Presentation

“How Important is Diet in the Management of Wilson Disease?”
Judith Fitzhugh, RD, LDN, CNSD, Transplant Dietician, Northwestern University Feinberg School of Medicine, Chicago, IL.
Dowload the PowerPoint Presentation

“Neurological Manifestations of Wilson Disease”
Aleksandar Videnovic, M.D., M.S., Assistant Professor of Neurology, Co-Director of the Wilson Disease Clinic, Northwestern University Feinberg School of Medicine, Chicago, IL.
Download the PowerPoint Presentation
“Speech and Swallowing Issues in Wilson Disease”
Kristin Larsen, M.A. , SLP, Speech and Language Pathologist, Department of Communication Sciences and Disorders, Northwestern University Feinberg School of Medicine, Chicago, IL.
Download the PowerPoint Presentation
“Coping and Caring: Family and Emotional Support for Living with Wilson Disease”
Diane Breslow, MSW, LCSW, Center Coordinator and Clinical Social Worker, Parkinson’s Disease and Movement Disorders Center, Northwestern University Feinberg School of Medicine, Chicago, IL.
Dowload the PowerPoint Presentation

Metabonomics a New Potential Diagnostic tool for Wilson Disease”
David Huffman PhD., Associate Professor of Chemistry, Western Michigan University, Kalamazoo, MI.
Dowload the PowerPoint Presentation

“Genetic Testing for Wilson Disease”
Melissa Dempsey, M.S. Director, Clinical Services and Education,Certified Genetic Counselor Molecular Diagnostic Laboratory, The University of Chicago
Dowload the PowerPoint Presentation


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Membership Fees

Please Choose A Membership Plan Below
  • Basic
  • $40
  • Receive WDA Newsletter via e-mail
  • Entitles one person of the household to be a WDA member
  • Sign Up
  • Basic +
  • $65
  • Receive WDA Newsletter via US Mail or Email
  • Entitles two people of the household to be WDA members
  • Sign Up
  • Silver
  • $125
  • Receive WDA Newsletter via US Mail or Email
  • Entitles all members of the household to be WDA members
  • Sign Up
  • Gold
  • $250
  • Receive WDA Newsletter via US Mail or Email
  • Entitles all members of the household to be WDA members
  • 50% discount on Annual Conference Banquet, up to two registrants
  • Special recognition as a Gold Member in WDA Newsletter
  • Sign Up
  • Copper
  • $1000
  • Receive WDA Newsletter via US Mail or Email
  • Entitles all members of the household to be WDA members
  • No registration fees for Annual Conference Banquet, up to four registrants
  • Special recognition as a Copper Member in WDA Newsletter
  • No annual dues
  • Sign Up

Common Queries and Questions

The course of liver disease in Wilson's disease stands in contrast to other forms of cirrhosis for many people. The chronic liver injury in Wilson's disease is caused by excess free copper, and the liver disease often stabilizes or even improves once the excess copper is treated with zinc acetate maintenance therapy. While some people do progress to need liver transplantation, others may actually see long-term improvement in their liver function over time. It is important to be attentive to issues such as immunizations for viral hepatitis, avoiding excess alcohol consumption, and treating complications of portal hypertension in order to give the liver its best chance to mend. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
Generally, the brain is affected symmetrically with excess copper deposition, although symptoms can be worse on one side of the body than another. This may have to do with factors of asymmetric neurologic development, such as being right or left-handed. The copper is often seen most prominently in the basal ganglia, the area deep within the brain that coordinates movements. The face of the giant panda sign refers to a characteristic appearance of the basal ganglia in advanced Wilson's disease. This is a description of the appearance of the basal ganglia wherein one can get an impressionists image of the face of a giant panda. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
High serum copper is not an indication of Wilson disease. Since most Wilson patients have a low ceruloplasmin they actually have a lower than normal serum copper. Ceruloplasmin is the protein that binds with copper to remove it from the body. It is the unbound (to ceruloplasmin) copper that is free to roam around the body and accumulate in organs causing Wilson disease damage. An elevated serum copper is more often due to an elevation of the level of serum ceruloplasmin since it contains ~90% of the circulating copper bound to it. Elevations of ceruloplasmin can occur with inflammation, in response to estrogen therapy and in pregnancy. Note: The exception to this is when there is severe liver injury (acute liver failure) caused by Wilson disease. This causes very large amounts of copper to be released into circulation and causes markedly elevated serum copper. When this occurs, patients are very ill and usually have jaundice (yellow eyes and skin color) and very abnormal lab results with respect to liver function and blood coagulation. - Michael Schilsky, M.D., Weill Cornell School of Medicine, WDA Medical Advisor
Hepatic: Asymptomatic hepatomegaly; Isolated splenomegaly; Persistent elevated AST, ALT; Fatty Liver; Acute hepatitis; resembling autoimmune hepatitis; cirrhosis (compensated or decompensated); fulminant hepatic failure Neurological: Movement disorders (tremor, involuntary movements); drooling, dysarthria; rigid dystonia; pseudobulbar palsy; seizures; migraine headaches; insomnia Psychiatric: Depression; neuroses; personality changes; psychosis Other symptoms: Renal abnormalities: amino-aciduria and nephrolithiasis; skeletal abnormalities: premature osteoporosis and arthritis; cardiomyopathy, dysrhythmias; pancreatitis; hypoparathyroidism; menstrual irregularities: infertility, repeated miscarriages From: A Diagnostic Tool for Physicians (3/04)
If the water is over 0.1 ppm (parts per million) (which is 0.1 mg/L), I recommend an alternative source. While 0.1 ppm isn't particularly hazardous, it indicates that significant copper is coming from somewhere, and at certain times or under certain circumstances the level might be quite a bit higher. George J. Brewer, M.D. Department of Human Genetics, University of Michigan Medical School
Yes. Since Wilson's disease often affects the liver, many Wilson’s disease patients cannot afford additional injury to the liver. Hepatitis A or Hepatitis B vaccine is as safe for Wilson's disease patients as it is for others. - H. Ascher Sellner, M.D.
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