Catherine's Crew

Why CCALS?

 

Cathy’s ALS journey was eased through help of Compassionate Care ALS (CCALS), Falmouth, MA.  Ron Hoffman is the founder of CCALS.  CCALS is a well-known and respected provider of holistic care for those touched by ALS and Ron has helped more than one thousand families so far.  In addition to having an amazing, compassionate heart, Ron brings with him a wealth of knowledge about how to navigate the difficult journey that disease sufferers and their families face.

 

Cathy and Ron met several months after her original diagnosis.   He evaluated Cathy’s living space and provided much needed equipment such as ramps, a shower chair, hospital bed, electric Molift to move her, spin discs, gait belts, and the list goes on and on.  Many do not even know these devices and equipment exist and insurance would cover none of it.  Someone at CCALS was always just a phone call away and the delivery of equipment seemed to happen overnight on most occasions. There was never any need to “sign for” anything as the relationship between CCALS and the families is based on trust and respect. 

 

Ron provided Cathy with many things including one-on-one, heart centered listening sessions that he refers to as “tending”.  Cathy treasured Ron’s visits and phone calls and they quickly developed a mutual respect and admiration.  He listened and talked with her about life in general, disease progression, living with ALS and its complexities, feeding tube and tracheostomy decisions, as well as end of life choices. His support and compassion, coupled with an extensive knowledge of logistics and institutional healthcare resources was a welcome relief to Cathy and her family when faced with difficult decisions seemingly every day.

 

On such a visit, Cathy told Ron about an upcoming, previously planned, family trip to Colorado.  She was very concerned about the anticipated and unimagined challenges of travelling so far from home, airlines, hotel rooms, rental cars, eating out etc.  Ron was quick to give her many tips on how to navigate the airlines, hotels etc. and also emphasized that she should inform the airlines staff that she had ALS, not just identify herself as disabled.  The next day, Ron contacted the local ALS chapter in Colorado and they provided him with contact information for a local hospital supply store and other resources nearby that could be useful during their stay.  It was the last trip they would take together as a family.

 

For families with ALS, traveling requires a lot of energy, planning, handicapped accessible accommodations and, of course, resources.  So, when Cathy learned that Ron and his team had launched a capital campaign to raise funds for the CCALS Education and Retreat Center, she was intrigued.  The Center is to be based in the historic Beach Rose Inn in West Falmouth, MA on Cape Cod.  It will offer patients, their families and caregivers the opportunity to escape the stress of everyday life in a fully equipped and handicapped accessible environment. There, all can enjoy one another’s company, share and learn from the experiences of others, find quiet solitude if desired, or to meaningfully contemplate their life journey. Equally important, the accommodations would be at no cost to ALS families and caregivers.

 

The progression of Cathy’s disease was extraordinarily fast – almost 8 months from diagnosis to death – and CCALS enabled Cathy and the family to just keep up with the rapid deterioration in health.  The support was not only amazing in extent but priceless in terms of “peace of mind”.   At a time when we are lost and fast losing hope, CCALS was a welcome resource, counselor and friend.  The Catherine’s Crew Campaign was started as both a memorial to her spirit and her desire to ensure that more ALS families would able to benefit from a friendship with Ron and CCALS for years to come.  

 

Please give generously in Cathy's memory.  Bring hope to those in need.  

Thank you!