Faces of ALS - Trickett's Story

With the excitement of last year's Ice Bucket Challenge, it is difficult not to think of the celebrities, like Lady Gaga and Jimmy Kimmel, dowsing themselves in ice cold water. We often forget about those who are really impacted about ALS. ALS does not discriminate. It impacts every gender, every race, every age, and every sexual orientation. It doesn't care if you are white or black. Gay or straight. It mercilessly attacks through generations of family members and at random. This is Trickett Wendler. Trickett was 39 years old when she was diagnosed with ALS. Along with the support of her three daughters and husband, Tim, she established what most of us could only every dream about --- the Fewell to Fight ALS Organization. The Fewell Organization helped to raise ALS awareness and money to be used in finding a cure for ALS. Sadly, Trickett passed away this Wednesday (March 18th), just shy of her 40th birthday. She was surrounded by her loving family and friends. When asked what people could do for her, Trickett said "keep fighting."

Click to Listen to Trickett's Story.

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The PALS First Campaign - "I Can't Wait" is now on Facebook. You can follow our newsfeed for up-to-date information about ALS research, ALS treatments, ALS news, and news about our Expanded Access Program for ALS treatments petition. Click the link to go to our facebook site: PALS First - "I Can't Wait"

PALS First Campaign Petition Update-Only You Can Make this Work!

 

Sign to support treatment for ALS Patients: Group Expanded Access Programs

www.change.org 

Step 1. Sign the petition with at least your name, city, state/country, and zip/postal code.

Step 2. Forward this petition to your network via email, Facebook, Twitter or other social media.

Step 3. Visit "I Can't Wait" -PALS First Campaign Blog.

When the petition first started in January 2015 our focus was on getting people with late-stage ALS access to the promising new patient-derived bone-marrow stem cell therapy, NurOwn (BrainStorm Cell Therapeutics, Ltd), which is currently wrapping up Phase 2 clinical trials in the United States. We realized that there are several other pharmaceuticals and therapies that could be made available to people living with ALS. More options means more people can receive these promising life-saving treatments.

Recently we updated the petition to include more pharmaceutical/treatment companies. We also simplified the petition adding a 3-Step Process for Success. As of March 8, We have received 3,042 Petition Signatures from across the United States, Canada, Mexico, South America, South Africa, Norway, Japan, China, India, Spain, Portugal. Our goal is to get at least 100,000 Signatures.
 

Expanded Access Programs allow people living with ALS who do not qualify for clinical trials to receive potentially life-saving therapies. This is not a pie in the sky dream. Expanded Access Programs ARE possible, but only with your help. People with ALS, their caregivers, friends, family and community members are all affected by this disease. It is up to all of us to make Expanded Access Programs a reality.

What you can do:

• Sign this petition (name, city, state/country, and zip/postal code).
• Speak with people one-on-one about the I Can't Wait PALS First Campaign.  Tell your family members, friends, faith-based and community organizations.  
• Post the petition and blog on your FaceBook and tell your contacts to re-post.
• Tweet the petition and blog on your Twitter Account using the hashtags #ICantWait #ALSCure #StrikeOutALS #IceBucketChallenge  
• Send your ALS story to fight4PALS@gmail.com   

Faces of ALS: William's Story

William L.  received the worst news imaginable on his 30^th birthday-- he had ALS.   ALS, more commonly known as Lou Gehrig’s disease, is a type of motor neuron disease in which the body attacks motor neurons, or the nerve cells found in the brain, brain stem and spinal cord resulting in the loss of control of muscle movement.  Patients progressively worsen losing the ability to walk, move their arms, eat food or swallow, speak or breathe on their own, eventually resulting in death. 

William is a loving, generous and compassionate husband, nephew, and cousin.  He never misses any family get-togethers and always makes each and every family member feel special.  For his wedding, William asked his 6 year-old cousin to be his best man.  In addition to enjoying nerf wars with his cousins,  William is a popular DJ at the Jersey Shore.  He is a well-known performer at the famous Tiki bar on the beach of Point Pleasant, NJ and Joey Harrison's Surf club on the beach of Lavalette, NJ.  His love and passion for life and his family shine through his music and bring many diverse people much joy.

Since his diagnosis of ALS, William has been robbed of the ability to do many of the activities he enjoys.  He says that living with ALS is like trying “to move in quicksand.”  Despite the symptoms of this debilitating disease, William is always quick with a smile and a joke.  His easy-going nature, kind personality, and light-hearted spirit put everyone at ease even in the most difficult and sad of situations.  Like so many other ALS patients, William and his family cannot wait for treatment.

Become a health advocate for people with ALS like William, please sign and share the petition to support Group Expanded Access Programs today.

Faces of ALS - Cheryl's Story

Cheryl S., 62 years old of Duluth, Minnesota, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2011 at the Mayo Clinic in Rochester, Minnesota.  ALS, more commonly known as Lou Gehrig’s disease, is a type of motor neuron disease in which the body attacks motor neurons, or the nerve cells found in the brain, brain stem and spinal cord resulting in the loss of control of muscle movement.  Patients progressively worsen losing the ability to walk, move their arms, eat food or swallow, speak or breathe on their own, eventually resulting in death.

Cheryl is a devoted mother and wife, a first-rate paralegal and compassionate leader in her church and community.  She serves as a second mother to many of the neighborhood children.  Prior to her first symptoms, Cheryl was an active outdoors enthusiast and loved camping, hiking, kayaking, and climbing.  Recently, Cheryl has been placed on a ventilator.  She is otherwise healthy and is in full possession of her mental faculties.  Cheryl has educated others about ALS in her church and community.  Her tenacity for life and her love for her family have garnered support that stretches beyond her small neighborhood to reach the halls of the United States Congress, Minnesota State Senate and House of Representatives.  Her wit, compassion and vivacious spirit bring a smile to everyone who is fortunate enough to meet her. 

Become a health advocate for people with ALS like Cheryl, please sign and share the petition to support Group Expanded Access Programs today.

Petition for Expanded Access of NurOwn to Late-Stage ALS Patients

Amyotrophic Lateral Sclerosis (ALS otherwise known as Lou Gehrig's Disease is a fatal, neurodegenerative disease.  Patients with ALS experience muscle loss, loss of movement, speech, and even breath.  There is no cure for ALS.  One person will die every 90 minutes due to complications of ALS.  NurOwn (a self stem cell based therapy) produced by Brainstorm, Ltd. has been shown to reduce and reverse symptoms of ALS in multiple phase 1 and 2a clinical trials.  However, late-stage ALS patients do not meet the eligibility requirements for NurOwn clinical trials.  This is a significant problem for two reasons.  One being that by the time patients are diagnosed with ALS many of them will be in the late-stage.  Two, that clinical trials must research a designated patient population to start the trial and recruitment is lengthy; therefore, patients who did qualify may no longer by the time the trial starts.  We are seeking expanded access of NurOwn to late-stage ALS patients.  Please consider signing and sharing the petition seeking expanded access of NurOwn: https://www.change.org/p/brainstorm-cell-therapeutics-ltd-grant-expanded-access-compassionate-care-of-nurown-autologous-adult-stem-cell-therapy-to-treat-cheryl-sweeney-and-other-late-stage-als-patients.  By becoming an advocate for late-stage ALS patients, you would be giving a voice to those who have lost their and giving thousands hope.