Creating is in our DNA....we are artists creating, producing and distributing unique greeting/note cards, gift enclosures and a growing line of complimentary functional art designs and products. We are inspired by making a difference. Please contact us to learn more, about our product line and custom work.

A portion of the proceeds from the sale of our products, will be contributed to organizations expediting the development of an effective treatment for children and adults living with Friedreich's Ataxia, a degenerative neuromuscular disorder.  

Since my husband's death in February 2015 (See below),  I am staying fiercely dedicated to raising funds and awareness, for the development of a treatment and cure for FA. To this date, the researchers are working hard, but there is still no treatment. The disease is alive and well.  Let's STAND UP to Rare/Orphan diseases!  Nick made the world a better place by being in it!  Thank you for your generous support.  ~Susan.

 

A Tribute to One of Our Biggest Fans

Mr. Nicholas A. Johnson, of Waltham, MA, died at home on Friday, February 20, 2015, after a valiant struggle with Friedreich’s Ataxia. He was 51.

Nicholas was raised and educated in Sudbury, MA, he graduated from Lincoln-Sudbury High School and earned a Bachelor of Science degree, in mechanical engineering, from Worcester Polytechnic Institute in 1985. 

Nick was an associate and senior mechanical engineer at Bard, Rao + Athanas Consulting Engineers LLC in Boston, MA. He was a registered professional engineer and certified energy manager and a certified LEEDs (Leadership in Energy and Environmental Design). Nick performed a wide range of engineering analyses for medical centers, universities, private corporations and other clients worldwide. He traveled extensively across the country giving engineering presentations and was very involved in the analysis and negotiation of energy rebates totaling several million dollars. He had completed energy analyses for several projects that received national awards from the American Society of Heating, Refrigeration and Air Conditioning.

From 1996 to 2000 he served as Chairman of the Massachusetts State Energy Advisory Committee and during his term as chairman, the committee developed and implemented a new state energy code. He was past president of the Boston chapter of the American Society of Heating, Refrigeration and Air Conditioning Engineers, and in 2014 was inducted into the ASHRAE Hall of Fame.

Nick served as chairman of the Muscular Dystrophy Association’s Massachusetts State Task Force on Public Awareness. He was very involved with many MDA fund-raising events and appeared annually on the local broadcast of the MDA Telethon. He was also a board member of the Friedreich’s Ataxia Research Alliance, and was involved with Voyager Therapeutics in Cambridge, MA, a pharmaceutical company dedicated to finding a treatment and a cure for FA.

In 1993 Nick received the MDA’s Personal Achievement Award for the New England Region. In 1995 he received the State Personal Achievement Award for Massachusetts, and in 2004 the National Personal Achievement Award.

In earlier years, Nick was a great athlete. He enjoyed playing tennis, baseball, running, working out/weight lifting.  He was an inspiration to many, just by the way he led and loved his life.
 

Remembering Nick
www.curefa.org
www.mda.org

    It doesn’t interest me what you do for a living. I want to know what you ache for, and if you dare to dream of meeting your heart’s longing.
    It doesn’t interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.
    It doesn’t interest me what planets are squaring your moon. I want to know if you have touched the center of your own sorrow, if you have been opened by life’s betrayals or have become shriveled and closed from fear of further pain. I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it or fix it.
    I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.
    It doesn’t interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself; if you can bear the accusation of betrayal and not betray your own soul; if you can be faithless and therefore trustworthy.
    I want to know if you can see beauty, even when it’s not pretty, every day, and if you can source your own life from its presence.
    I want to know if you can live with failure, yours and mine, and still stand on the edge of the lake and shout to the silver of the moon, “Yes!”
    It doesn’t interest me to know where you live or how much money you have. I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children.
    It doesn’t interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.
    It doesn’t interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else falls away.
    I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.
  

 From The Invitation by Oriah
Copyright © 1999 by Oriah Mountain Dreamer