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ALS Registry

May 2013

In this Issue . . .  


Ask the Doc: Q&A with Edward Kasarskis, MD, PhD

Kasarskis
Dr. Kasarskis

Organ Donation and ALS

Q:  I just saw an episode of Grey’s Anatomy that featured a younger person with ALS who used an advance directive to discontinue his life support so he could donate organs. It disturbs me that the show featured an ALS patient, since I understand that the majority of – if not all – state donation systems refuse to accept organs from people with ALS, apparently because the cause of ALS is not completely understood. What should people know?

A: Yours is an insightful and complicated question.  The answer will not be brief.  Unfortunately, we don’t know the exact cause of sporadic ALS and this uncertainty breeds caution around the issue of tissue and organ donation.  Although there is an extremely small probability that donated organs or tissue could cause any problem whatsoever in the recipient, there is still some level of lingering concern that the disease might be transmissible from one human to another in rare cases.  Research scientists have tried to transmit ALS from human tissues into recipient research animals and have not been able to do so.

In my opinion, the background concern comes from the group of so-called "prion diseases." Think back to the Mad Cow Disease epidemic in England and all the concerns surrounding this.  Prion diseases are a family of rare progressive neurodegenerative disorders that affect both animals and humans.  Considered to be “transmissible spongiform encephalopathies,” they are notable for their long incubation periods, neuronal loss, and the lack of an inflammatory response to the disease.  It’s believed prions are abnormal transmissible protein agents that cause the normal brain proteins to fold in an abnormal way, which leads to brain damage and usually results in progressive dementia and not ALS. The diseases usually progress rapidly and are uniformly fatal.  The best-known example in humans is Creutzfeldt-Jacob Disease (CJD).

How does all this relate to organ donation?  The organ donation laws vary state by state.  It appears that the intent of these statues is to maximize the number of organs for donation while keeping the recipients safe from a transmissible disease.  So if the cause of an illness (such as ALS) that resulted in the donor's death is not known, some states might not accept a tissue or organ donation from such a person.  The unstated concern is that a progressive disease in someone that looks like typical ALS might be a transmissible disease.  Theoretically I understand that might happen, but it is a very, very rare occurrence.  

That said, it’s important to emphasis that we do not believe ALS is transmissible.  Families ask me that question all the time, and I tell them that if ALS were infectious, I would have caught it a long time ago!  Lou Gehrig was worried about this very issue and actually wrote a letter from the Mayo Clinic reassuring his wife that she could not catch ALS from him.

The overwhelming likelihood is that it would be very safe to receive organs and tissues from an ALS patient, and if your state allows it, such a donation would be a reasonable thing to do.

Know that in addition to donating for transplantation, the need for tissue for research is great. There are many academic medical centers and research organizations that collect tissue donations from patients, and the VA also has a tissue bank. There is also the opportunity to donate one’s body to medical schools for teaching purposes. These resources are needed for a wide range of important studies. Gifts for these purposes make a substantial contribution to furthering medical knowledge about ALS and other diseases.

If you’re interested in being an organ donor or making a contribution to science, don’t assume you can’t.  Raise the question and find out what the rules are in your state. Work with the donor staff at your hospital or health center to learn more.

If a person with ALS who depends on a respirator to breathe decides to withdraw respiratory support – as in your example from Grey’s Anatomy -- know that the individual can be kept comfortable, be weaned from the ventilator and can pass away peacefully.  The prospect of organ and tissue donation can be brought up before that decision, or afterwards, and the person who is next of kin would be in the position to put that possibility forward.  

These are very complicated issues that cut across law, medicine, religious beliefs, and ethical concerns.  Every hospital and hospice organization has individuals or teams to help with discussions about the ethical questions.  

In short, a wide range of organ and tissue donation options are available to people with ALS, depending on their state and on whether they are also interested in making a donation to education and research.

If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.   


May is ALS Awareness Month: Spread the word

ALS Awareness MonthALS Awareness Month takes place each May. This year, we invite you to help us spread awareness about Lou Gehrig’s Disease in your community via our website and Facebook and Twitter.

The 2013 ALS Awareness campaign theme is “Create a world without ALS. Speak up now to give Hope.” You too can give hope to people and their families living with this disease by taking action in one or various ways.

  • Visit The ALS Association’s campaign landing page to see what you can do.
  • Tell your story about living with ALS and what you hope for.
  • View stories/videos from people impacted by the disease and share them on social media.
  • Become an ALS advocate to help influence lawmakers on important issues facing people with the disease. 
  • Sign up to receive important and timely information from The ALS Association.
  • Make a donation to support the fight against ALS.
  • “Like” The ALS Association on Facebook
  • Follow The ALS Association on Twitter @alsassociation.

Thanks to the generosity of our corporate partner, Pride Mobility, the four stories/videos that receive the most social media shares on Facebook will allow the chapters in these storytellers’ zip codes to receive a Quantum Q6 Edge chair for their loan closets! Our chapters will make these wheelchairs available to people with ALS at no charge.

The Association will also host the 2013 National ALS Advocacy Day & Public Policy Conference, which takes place in the nation’s capital May 8 to 11, 2013. This conference empowers people with ALS and their families by allowing them to meet Members of Congress on Capitol Hill and share their stories, advocating for policies to speed the development of treatments for Lou Gehrig’s Disease.

Your participation in this campaign is vital to helping both those whom ALS personally impacts as well as our chapters. Your actions this month – and throughout the rest of the year – will have a positive impact on people battling ALS. The more people who speak up about this horrendous disease, the greater the impact we will have in creating a world without ALS.  

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A New Resource to Help Access Clinical Trials

A new Internet resource, MyClinicalTrialLocator.com, has just been launched to help make it easier for people to find clinical trials that fit their needs.The free website helps consumers have greater access to clinical trials in their area and around the world, and makes it possible for researchers to connect with qualified participants.

Gardening

“As the number of clinical trials increases, consumers need an easy way to target trials that are close to their homes or preferred medical institution, while researchers face increasing competition in enrolling enough trial participants to generate meaningful data,” said Dr. Charles Rudin, associate director of clinical research at Johns Hopkins University.
It’s simple to use. The website is designed to help visitors search for trials available by medical condition, treatment, location, medical center or other terms. It's accurate, updated frequently and includes information from clinicaltrials.gov (sponsored by the U.S. National Institutes of Health) and academic medical centers.


The site offers information about clinical trials worldwide, provides a mapping function to pinpoint the location of a trial, and will notify users when trials matching their needs become available. It also allows patients to email clinical trial researchers directly, and academic medical centers can update and correct information on the site in real time.


To use MyClinicalTrialLocator.com visitors to the site simply input the name of a disease or condition – such as ALS – their location, and the number of miles they are willing to travel. Once the information has been entered, a list of both open and closed clinical trials appears. By clicking on each listing, consumers get comprehensive information on each trial, eligibility details and contact information. Those who register on the site can be notified when an appropriate clinical trial is available.  Soon the website will provide social networking features which will connect users interested in similar topics with other consumers, relevant medical sites and researchers.   

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Financial Fitness: Finding and Filing Key Paperwork

By Barbara Bronson Gray, RN, MN

financeIt’s been said that 90% of life is paperwork, and that’s certainly true when it comes to efficiently and effectively managing your finances. Not only will an organized collection of critical documents make it easier for you to find what you need when you need it, but having a well-arranged folder with important financial information can help your spouse, family or friend help you should you need assistance.

One of the toughest challenges in accessing your personal information in the computer age is the proliferation of passwords. While they’re necessary, of course, to keep information private and secure, they’re tough to remember. That’s complicated by the fact that some websites want six letters, others want more, and many want a combination of letters, numbers and symbols. Financial planning experts recommend you keep an easy-to-read page in a safe, private place in your home that lists the passwords for your key accounts, such as banking, investments, social security, insurance, credit card and checking accounts, and more.

Experts also suggest that you bring whomever you choose as your financial “twin” into the loop, and review with him or her all of your financial accounts, issues and challenges.

As for what to gather for easy and quick access, the National Institute on Aging recommends you gather together:

Sources of income and assets (such as pensions, IRA, 401(k)s, interest, etc.

  • Social Security and Medicare information
  • Insurance information (life, health, long-term care, home, car), with policy numbers and agents’ name and phone numbers
  • Names of your banks and account numbers (checking, savings, credit union)
  • Investment income (stocks, bonds, property) and stockbrokers’ name and phone numbers
  • Copy of your most recent income tax return
  • Location of your most up-to-date will, with an original signature
  • Liabilities, including property tax: what is owed, to whom, and when payments are due
  • Mortgages and debts: how and when paid
  • Location of original deed of trust for home, and car title and registration
  • Credit and debit card names and numbers
  • Location of safe deposit box and key

For more information, see “A Guide to Financial Decisions,” from the American Institute of CPAs.   


Participate in these Educational Web Calls

Travel Tips for People with ALS

https://alsa.webex.com/alsa/k2/j.php?ED=18015613&UID=116982143&HMAC=ed19b229ee228265eec0bf8eb406d18517dc2b48&RT=MiM0



Research about NeuRx Diaphragm Pacing

May 21, 2013, 1 p.m. Pacific Daylight Time, 4 p.m. Eastern Daylight Time
Hosted and organized by The ALS Association's Research Department
Speaker: Jonathan Glass, M.D., Emory University, Atlanta, Georgia

Speaker: Kristen Gruis, M.D., associate professor of neurology, SUNY Upstate Medical University, New York
The NeuRx DPS® is a neurostimulation technology approved by the U.S. Food and Drug Administration (FDA) for treating people with both ALS and other breathing problems.

Call-in toll-free number (US/Canada): 877.668.4490
http://www.alsa.org/research/research-webinars.html

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