PALSFirst Campaign Leader Dies Friday from ALS

Cheryl Anne Beede-Sweeney, courageous wife, daughter, sister, and mother of three passed away Friday, July 3, 2015 in Duluth, Minnesota after a long battle with Amyotrophic Lateral Sclerosis (ALS)/Motor Neuron Disease (MND).  

ALS, also known as Lou Gehrig's Disease is a fatal disease that rips away your ability to move, eat, speak, and breathe. Every 90 minutes someone is diagnosed with ALS and another dies.  There is no cure for ALS.  Only one drug on the market exists that prolongs life on average only three months.  Like many people with ALS, Cheryl did not qualify to participate in clinical trials due to current lengthy diagnostic criteria and strict inclusion/exclusion criteria.  Years were spent trying to access BrainStorm Cell Inc.'s NurOwn stem cell treatment via the U.S. FDA Expanded Access Program, but BrainStorm Cell Inc. denied her access to this potentially life saving treatment, thus was the birth of the PALSFirst Campaign.   

Cheryl truly was the heart and soul of the PALSFirst Campaign.  She was a natural leader, advocate, and faith-based healer.  Her smile, continuous love for others, and hope that there would be a cure someday for ALS filled others with joy.   More than anything, Cheryl wished for others suffering from ALS to have the opportunity to try new treatments through clinical trial redesign, U.S. FDA Accelerated Access and Expanded Access Programs, and policy reform.  Cheryl's presence will be greatly missed, but her legacy will live on with the PALSFirst Campaign and all those who continue to fight for access to treatments.  

Cheryl Beede Sweeney's Obituary

ALS Book Reading Event Arrives in Wake of Author’s Death

Bruce H. Kramer with his granddaughter.

 

Wednesday, March 25, 2015, over 200 people arrived at the O’Shaughnessy Educational Center on the St. Thomas Campus in St. Paul, Minnesota, where former Dean of the College of Education (Applied Professional Studies) Bruce H. Kramer had walked the halls.  Kramer passed away last week just in time to see his book bound and ready for distribution.

Kramer was a physically active person, a world traveler, musician, and loved spending time with family, friends and others.  He was diagnosed with ALS in 2010, but did not let his illness stop him from living life to its fullest.  He taught classes at St. Thomas University, was a frequent blogger, and participated in a Minnesota Public Radio (MPR) segment with morning edition host Cathy Wurzer.  Kramer and Wurzer struck a bond as Wurzner was struggling with her own losses, the slow decline of her father from dementia.  Wurzer and Kramer co-authored the book: We Know How this Ends: Living While Dying. 

Family, friends, and those touched by ALS gathered to celebrate Kramer’s life and book.  The event was moderated by MPR journalist and co-author Cathy Wurzer, and Jennifer Myhre from the ALS Association, Minnesota, North Dakota and South Dakota Chapter.  Wurzer and Myhre were joined by Kramer’s sons Jon Emerson-Kramer and Dave EK Hollins as they read chapters from the book and Good Samaritan United Methodist Church Choir, who   sang Amazing Grace in remembrance of Kramer who had been their choir director. 

 “There will be grief.  I live in a space where there is grieving.  But there is great joy in grief and there is great happiness in sadness.  I have been given enormous gifts in this process that have allowed me to see things I never thought I would ever see.”

-Bruce Kramer

March 1, 1956-March 23, 2015

 

·         Bruce’s Blog:  http://diseasediary.wordpress.com/

·         MPR 1:  The Solace of Music  http://minnesota.publicradio.org/display/web/2011/12/05/bruce-kramer-als-part-1/

·         MPR 2:  Turning to Mayo http://minnesota.publicradio.org/display/web/2011/12/16/bruce-kramer-als-part-1/ 

·         MPR 3:  The Tell

        http://minnesota.publicradio.org/display/web/2012/03/06/bruce-kramer-als-the-tell/ 

·         MPR 4:  Bruce Kramer moves house  http://minnesota.publicradio.org/display/web/2012/05/01/bruce-kramer

·         MPR 5:  A teaching career reframed  http://minnesota.publicradio.org/display/web/2012/06/19/bruce-kramer-als-classroom/

·         MPR 6: Managing the stress of caregiving  http://minnesota.publicradio.org/display/web/2012/06/28/health/living-with-als-part-6-caregiving/

·         MPR 7: The seasons change http://minnesota.publicradio.org/display/web/2012/08/20/health/living-with-als-bruce-kramer/

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.

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.