Ski to defeat ALS - Mt.Hood Meadows

A Ski fundraiser is to be held on April 13, 2013, between 7:30 am and 5:30 pm in Mt.Hood Meadows.

Follow this link to their registration website -

http://webor.alsa.org/site/TR/Events/OregonandSWWashington?fr_id=8760&pg=entry

Sounds like an exciting opportunity to have fun and raise funds toward a cause!

Here's the email I received from Meagan Lancaster of the ALS Association. 

Dear A, Epic. Amazing. Celebrating movement. If you asked the sold-out crowd at last year's Ski to Defeat ALS, these are the  words they would use to describe the day. Well, we'd like to invite you to join them this year, and we have a little something to help sweeten the deal for  you and your friends. Dinner. On us. At Ruth's Chris Steakhouse.  What is the Ski to Defeat ALS? This event is a way to combine your  passion for skiing and snowboarding with your dedication to the  ALS community. We offer you a full day of skiing or snowboarding  on Mt. Hood Meadows, three full meals, great entertainment, prizes,  awards, and more. It's not a race, but there are some fun contests to  win! People with ALS can participate because of our partnership with  Oregon Adaptive Sports (OAS) and use specialized equipment to get  themselves up and down the mountain.  When is it? Saturday, April 13th. The event is open as long as the lifts  at Mt. Hood Meadows are. How much does it cost? The cost is just $75 for those who need a lift  ticket. And, for those with a current Mt. Hood Meadows season pass,   just $25. Because of our generous sponsors, our friends living with ALS  do not have a registration fee.  Please note - all participants must raise $150 by the day of the event  to participate and space is limited. Fundraising is easy. And, it's fun. We're here to help make sure you  reach this important milestone. Need help? Just ask. It's what I'm here for.      And that free dinner on us? Register by January 31st  and you'll be entered to win one of two $50 gift cards  to Ruth's Chris Steakhouse!   Meagan Lancaster Fundraising Manager The ALS Association Oregon and SW Washington Chapter 800-681-9851x2 PS - If you have registered on our website before for any event, be sure  to use your same username and password. It will remember all of your  information and really help on our end. If you cannot remember, just  simply reply to this email and I will get you rocking and rolling!

Exciting news regarding ALS research

A very excited Linda emailed me some news regarding neuroscience research and a huge donation toward it. After reading through her email, I was very excited too! Columbia University's president Lee C. Bollinger announced that Mortimer B.Zuckerman pledged two hundred million dollars to the new Mind Brain Behavior Institute!

The a key focus of the research to be conducted at the institute will be on "therapies and cures for disorders such as Alzheimer’s disease, Parkinson’s disease and amyotrophic lateral sclerosis (ALS), neurodevelopmental disorders such as autism and Asperger’s, schizophrenia and mood disorders, memory loss, neurotrauma and stroke, decision making, theoretical neuroscience, sensory perception and neural stem cell biology." (From the Columbia news website, news article 2999)

Now that IS exciting!

The full article can be found here

While answers are still far away, this is a significant commitment to our future when ALS will not have such an inexplicable and devastating effect on lives. It was heartening to note the many conditions that are to be researched further and how they hope to understand the conditions through an interdisciplinary approach. 

In case the hyperlink above does not work, here's  a link to the article - 

http://news.columbia.edu/home/2999

Here is a link to an article regarding the construction of new buildings on the West Harlem Campus of Columbia University that will house the Mind Brain and Behavior Institute :

http://online.wsj.com/article/SB10001424052748704518904575365073094784004.html

I have two quotes here that put words to what I feel regarding hope and moving forward - 

Learn from yesterday, live for today, hope for tomorrow. The important thing is to not stop questioning - Albert Einstein

And then there is this anonymous quote that, while full of adjectives, completely resonates with how I feel.

Hope sees the invisible, feels the intangible and achieves the impossible.

Hope quotes sourced from : http://www.finestquotes.com/select_quote-category-Hope-page-0.htm

Update on the Sept 15, 2012 walk

It's been a while since I've written on this blog. There have been family commitments and friends visiting from far off places. I had hoped for a chunk of time that could be properly devoted to the blog, and realized that it would never come! And of course, the simultaneous realization that I had to grab what time I could! There is a bit of exciting news regarding ALS research that will be posted next.

Laurie's Lions : Linda is on the right, holding up the red ALS banner. I love this picture of Linda, striding purposefully forward...

For this post, I would like to share a great picture of Laurie's Lions as they lead the ALS walk on the Capitol grounds in Salem, Oregon on Sept 15, 2012. Linda shared this lovely picture with me, taken during the walk. Laurie's Lions was again the top fund raising team this year for the Salem Chapter. As per a new tradition starting 2012, the ALS Assn. of Oregon & SW Washington is going to have the leading fundraising team for each walk carry the ALS banner.  (Oregon now has 5 walks:  in Salem, Portland, Eugene, Bend, and Medford. The SW Washington Chapter has its office in Vancouver and covers 6 counties.) 

I do so hope that Laurie's Lions carries the ALS Banner (right upfront in red) in 2013 too. Funds, no matter how small, donated to ALS research and the PALS would at the very least, allow better care for both, the person suffering from ALS and their patient care givers. A small example is how funds allow for greater availability of necessary equipment (wheel chairs, communication devices, feeding equipment, even spares) in the Medical Loan Closet.

I'll put up information regarding the next walk when I receive information from Linda. Your contribution to the cause will be greatly appreciated!

Oregon chapter ALS State Capitol Walk - Saturday, September 15, 2012

When I first heard from my good friend Linda about her sister Laurie's fight against ALS, I was struck by how the disease completely changed the life of a vibrant woman. The effect her fight has had on her family is both deep and permanent. Having worked in healthcare, I could guess the enormous time, resources and effort required to properly care for those whose bodies are weakened and paralyzed by this condition. And of course, hearing about Laurie's life and seeing pictures of her family made very real what I'd known in a small corner of my mind - there is still no proper cure for ALS. There is research being conducted the world over, and a tremendous need for funds, both for research and daily care giving for those living with ALS.

In our economically stressful times, the need for funds is even more urgent. Much needed equipment such as communication devices, wheelchairs, air beds to minimize sores and many other effects are made available to families for free. This is through a "Medical Equipment Loan CLoset". Funds generated through the walk go toward buying and maintaining equipment that already stressed families can borrow for free.

We have a fresh link here that takes you to Linda Batty's webpage on the ALS Association's Oregon and SW Washington website.

The walk this year is to be on the State Capitol grounds in Salem, Oregon on 15 September, 2012. Linda will be with the Laurie's Lions team. 

Do visit Linda's webpage to read more about/donate to the ALS walk and/or Laurie's Lions this year. Linda and Laurie's journey can also be found on this blog here.

Linda and Laurie, as children.
http://webor.alsa.org/site/TR?px=1590024&fr_id=8225&pg=personal

Let them know how they can help!! - A post by Linda Batty

pic credit - Naypong; freedigitalphotos.net

The varied and bewildering symptoms of ALS don't immediately lead to a definitive diagnosis. For Laurie, those were early agonizing months of doctor's visits and tests to try to explain why she could no longer run sprints, let alone walk "normally". Though she so desperately wanted to carry on with her active life, and in fact she gamely tried to hide these peculiar phenomenon from friends, which was already affecting her leg movement, she first wanted an explanation of the problem, and she certainly didn't want pity. In the meantime, however, everyone noticed that Laurie wasn't quite her usual, sprightly self. As more and more people began asking her questions, she found email to be the easiest way to stay in touch with everybody, and she was already sending out monthly update emails by time she got the ALS diagnosis. The email list grew to the hundreds, and some people even forwarded Laurie's update letters to their friends. People felt so badly for Laurie. They wanted to help in some way, but what could they do? 

The family wanted to utilize the generous offers of help that were coming in, but how? It can be awkward to call and ask someone to come and do some work! Fortunately a few friends and relatives right away delivered home cooked meals to the house, another came to do house cleaning. Yet with ALS, the needs only increase as the disease becomes more and more debilitating, and the family realized they'd better start planning right away for the future. At that time Laurie's and Linda's sister-in-law came across a wonderful book entitled "Share the Care" and she shared it with Linda. The book provided the caregiving answer! Laurie and Linda invited to Laurie's house one evening, all those who had offered to help.  A list was passed around with of all sorts of chores where each person could put a check by their interest or area of expertise, along with days and hours of availability. The response was tremendous. Some people even added new categories.

Thus, there were two ladies who came in twice a week to wash Laurie's hair, one of them also did her nails and provided a face and hands beauty treatment, other friends were chauffeurs to take Laurie to doctor's appointments or to run errands, another brought a supply of breakfast muffins for the freezer, one came to provide physical therapy for her legs, a neighbor came every week to read books, cousins came in groups and raked leaves, cleaned the house and provided meals, and so on. Laurie's husband ensured that he was there to take care of her morning routine every single day, getting her out of bed, bathing her, getting her dressed, giving her a few cycles of the Bi-Pap machine, and giving her breakfast (via a feeding tube).  

As a gesture of thanks for the immeasurable support, Laurie's family decided to hold a birthday party to celebrate Laurie's and Linda's 56th birthday where they would invite the Share the Care team (as they now called it) for a picnic lunch and birthday cake at Laurie's place. The invitation requested only the "caregivers' presence, no presents" :-) The caregivers had ideas of their own though! They insisted on bringing all the food!  It was a lovely sunny afternoon, with picnic tables spread out on the grass, and a festive atmosphere. There were 2 surprises too! A friend arranged to have a clown come to entertain with magic tricks and mimes. Another friend played Amazing Grace on the bagpipes off in the distance, then walked up the road to the grassy slope of the party venue while continuing to play. It was very moving but oh so beautiful. What was intended to be a gesture of thanks for the caregivers, turned out to be yet another wonderful gift from those generous caregivers! Knowing that everyone was there for Laurie was an enormous comfort. Yet, the grim future that Laurie still faced was on everybody's minds.

Sometimes just one person (often the spouse) shoulders the caregiving aspect alone, but it can be draining on emotions, time, and finances (spouses or family members sometimes even quit work to provide the care themselves because they can't afford a caregiver). Thanks to the caregiving team, Laurie's husband did not have to become a full-time nurse, but was able to maintain some sort of continuity in his life by carrying on with some part-time work, working in the yard, etc. 

Laurie and her family's life was made easier by generous contributions of time and effort from many. While each gesture may have seemed tiny by itself, it was just that sort of thing that Laurie could no longer do for herself. This team was just what was needed.  Laurie's family used parts of the Share the Care model to maintain some harmony in their lives. Perhaps it, or some modifications to it, could work for others too.

pic link - http://www.freedigitalphotos.net/images/view_photog.php?photogid=2617

Exchange of information

When Linda and I talk about the painful impact of ALS on individuals and families, she mentions how it would make sense if there was a greater exchange of information available between research groups/countries. The thought that two research groups work toward the same goal, one reaching it first, in silence, while the other continues to plod along, does seem to be wasteful; especially for a disease where time is the first element of life that is mercilessly cut down.

Resources appear to be difficult to come by as well. Sharing information could potentially reduce the time and tangible resources that are in short supply.

pic credit - jscreationz; freedigitalphotos.net

While browsing through websites that highlight shared resources, I stumbled across the World Federation of Neurology. World wide organizations conducting trials are mentioned in this one place. It would be wonderful if there was new information available, and someone found a cause and a cure for ALS. Only, it would be wonderful if it were sooner rather than later.

Another very useful website has conference listings from all over the world, where they discuss advances/challenges/current research being done. Click here for more information.

The NHIC database, had links to the International Alliance of ALS/MND webpage. Information about member countries, individual group efforts and research is found here. They also have an interesting "Needs and Offers" section. Individual organizations may list their "Needs", email them to the alliance, and these are discussed at the annual Alliance Meeting, whereupon members review them and make "Offers" for what they can assist with. Click on this Needs and Offers link for more information.

I will continue to update links as and when I find information.


pic link - http://www.freedigitalphotos.net/images/view_photog.php?photogid=1152

Efforts toward enabling greater awareness of ALS' impact

There have been many efforts over the years to enable greater awareness of the impact of ALS. I learned of these through Linda Batty, who has been involved in many efforts toward improving ALS awareness.

Linda explained "Advocacy Week".

"There is a week in the USA called "Advocacy Week" where people from all over the US come to meet with their senators and representatives in Washington, D.C. to support various causes. ALS chapters participate in this event, and every year they like to send two or three Persons withALS (PALS) to meet with their congressmen.  Most of these PALS arrive in the nation's capital in wheelchairs, many already unable to talk except by computer. One can imagine the powerful message given by PALS via computer. The heartbreak in spouse's and children's faces sends its own message."

 In the year 2007, a bill was introduced, after efforts to recognize the need, for a registry of those affected by ALS ((ALS registry act H.R 4003/S.1353). In 2008, through the enactment of the ALS Registry Act, establishment of an ALS patient registry was made top priority. Enrollment began in 2010.

The representatives are also urged to include funding for ALS specific programs in the each Fiscal Year. Funding is required to allow enrollment, disseminate information about procedures, and to ensure that people in remote areas are aware of the existence of the registry. A registry would go a long way toward logging the exact number of cases, and spurring more initiative toward research and care.

This link takes you to the ALS Association's ALS registry webpage for more information and updates.