A History of A Life Story Foundation

We are immensely proud of all that we've accomplished. Here is our journey in a snapshot. A key pillar of our mission is to empower work that results in effective treatments, and ultimately a cure for ALS. In 2019 3 potential treatments made it to Phase 3 Clinical Trials. That's more progress than the past 10 years combined. For as far as we've come, there is so much work yet to be done. Join the fight - tell a friend, make a donation, start your own fundraiser, like our Facebook page... there are so many ways to get involved. Thank you for joining our mission over the years, and thank you for all the ways you continue to support A Life Story Foundation.

May is recognized as ALS Awareness Month

Note from Kevin

May is almost over, so that means that ALS Awareness Month is too. It's always nice to see a bump in action around a topic that is all too familiar to so many of us. I think it's so important that we use this new found momentum as a springboard for the year ahead. There's been more significant advances in the past year than the previous five combined on the drug development scene!Heck, former president Barack Obama tweeted about ALS yesterday, underscoring the critical urgency to continue until we "win this fight"!

Please help us keep marching and rolling forward! 

Kevin, Shaina and Elliott

The Facts of ALS - as of May 2019

For our Caregivers:

Trach Care - 101

As ALS progresses, breathing becomes more labored. PALS have the options of using a BiPAP machine, or a ventilator with mask that assists in pushing the air into the airways, or a tracheotomy. 

It has been two years since Kevin underwent his tracheotomy. 

A tracheotomy is a permanent option to assist in the breathing of PALS. An incision is made into the windpipe, into which a tube is inserted. Air is then pushed through the tube, with the use of a ventilator, directly into the windpipe.

As with any surgical procedure, special care is needed with the trach tube. Kevin's caregiver, Sue, makes sure to have all of the supplies nearby for his trach care. These include a trach care kit, six cotton swabs (in addition to the two in the kit), gloves, 4"x4" gauze pads, new dressing for the trach (or "pants"), hydrogen peroxide, and a new collar. 

The first few steps Sue takes are setting up the supplies. She removes the tools located inside the trach kit, but leaves the two cotton swabs in one tray and adds the additional swabs, leaving four in each section of the tray. From there, she mixes a half and half mixture of distilled water and hydrogen peroxide. Sue adds distilled water to one section of the tray, and the water and hydrogen peroxide to the others. 

Next, Sue puts on her gloves to remove the old dressing and collar from the trach. She pulls the balloon out of the tube to check the pressure - an important step, because this balloon prevents any air from escaping through the upper airway. 

The gauze pads are then dipped in the distilled water and used to wipe any drainage and crusties away from the stoma, or opening where the tube is inserted. After wiping away, Sue clears around the stoma with the water and hydrogen peroxide mixture, swabbing away from it, with a maximum of 3-4 swipes per cotton swab. She then takes the cotton swabs in just water, and repeats the steps. 

Ensure to dry around the stoma, always wiping away from the stoma. Sue then puts the new dressing and trach collar into place and disposes of any waste. 

Thank you to Sue for shedding light on one of the parts of Kevin we see every day, but may not know how to tend to! 

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The smoothie is made for the entire day. How much you eat at one sitting will determine how much to make (4.5 cups is made each day because three 1.5 portions will be eaten during the day)

Here are the ingredients that are used in every smoothie – Protein powder (GNC pro performance bulk 1340 vanilla is what is being used currently, it dissolves in liquids very well) and peanut butter.

There are also 2-3 fruits and vegetables added to the smoothie. Vegetables usually need to be cooked for them to blend up well. Try to use fruits without little seeds as they can get stuck. Skins on fruits and vegetable are usually peeled off for ease of blending. Here are some common ones added – banana, avocado, spinach, oranges, blueberries (blend well), sweet potato, carrots, squash, apple, tomato, cantaloupe, pear. Use whatever is in season or frozen works well too. Defrost frozen fruits and vegetables to make blending easier. We don’t use things like broccoli and cauliflower because they cause heartburn.

The liquids used are 100% juice such as Naked brand kale blazer, carrot juice, and tomato juice. Also used are soy or coconut milk and coconut water.

It’s important to get a thin enough consistency to easily go through the extension set.

A regular blender will not work well. We use a Ninja and it works great. You need one that will really break up the fruits and vegetables.