Tuesday, September 10, 2013

14 September, 2013, Walk to Defeat ALS


The Walk to Defeat ALS will be held this year, on Saturday, 14 September, 2013. Registration begins at 11:00 am and the Walk begins at 12:00 pm. The venue is the Oregon State Capitol grounds.

The Walk is held by the SW Washington and Oregon chapter of the ALS Association. 

My connection to this cause is through my friend, Linda Batty. Linda's sister Laurie died seven years ago because of ALS. Laurie's life and death continue to impact and inspire her loved ones and many others. Lind and Laurie's story can be found here .

Efforts toward finding a cure continue with new discoveries and understanding of ALS. But the cure continues to be elusive, and ALS continues to snuff out lives, and challenge families to provide more assistance, funds and most of all, courage.

I have been late this year, due to personal reasons, with posting a link to Linda's personal page for ALS Support. There are still three days before the Walk, and the Walk itself is a memorable event.

Linda Batty's personal ALS Walk page

For anyone who might be in the area, it is worth seeing PALS (Persons currently living with the disease (PALS) participate in the walk with as much determination and spirit as their families, friends and well wishers.

Any donations that you may choose to make will go toward caring for PALS and offering relief for families that often struggle with many day to day and financial concerns. I am copying the following information from an earlier post on this blog ( http://reachforacure.blogspot.com/2011/08/als-or-lou-gehrigs-disease-story-of.html)

What are the basic supplies needed for people affected by ALS?
              The more expensive supplies include manual and motorized wheelchairs, shower benches, air beds, bi-paps to assist breathing, and communication devices.
              There are many other aids like walkers, hospital beds, pressure relieving mattresses, patient lifts and transfer devices, to assist in the daily lives of PALS living with the disease. The ALS Association, Oregon and SW Washington Chapter has a loan medical equipment loan program to help minimize these costs for families.          
          
             What are costs of these supplies?         
             Some of the most expensive items include an accessible van (usually between $25,000 - $35,000 that is needed to transport a heavy and bulky power wheelchair, as well as $25,000 for power wheel chair,  $1000 hospital bed, $5000 bi-pap, a $6000 cough assist machine, a $8000 communication device and more.   

              To contribute to the ALS Walk, please visit the ALS Support page.


For a look into the Association's goals, here is a link to an older post, where Linda and other members of the organisation answer commonly asked questions : http://reachforacure.blogspot.com/2011/08/als-community-support-groups-goals-and.html

Linda's own perspective on care giving can be found here in her own words http://reachforacure.blogspot.com/2012/01/pic-credit-naypong-freedigitalphotos.html

Your time and support is a valuable asset, Support in the form of donations, attending the Walk or even sharing information can provide much needed relief for those fighting this battle with ALS, that they hope to win to someday.

Saturday, January 19, 2013

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!

Thursday, January 17, 2013

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!

Monday, August 13, 2012

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

Tuesday, January 17, 2012

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