Team Emerson

Emerson’s birthday is coming up on February 10th. She would be three years old this year. As a way to celebrate her life we’ve decided to run the Cupid’s Chase 5k on her birthday, and to raise funds for three non-profits (one for each of the years since Emerson came into our lives!) that have been especially meaningful to us: Courageous Parents Network, Faith’s Lodge, and the Children’s Gaucher Research Fund. 

Emerson had a way of bringing people together, and revealing the humanity and goodness that really does exist all around us. We’re honored to continue her legacy by giving back to these organizations, and helping them to continue helping other families like ours. We will split the funds we raise equally among the three organizations. No donation is too big or small, even just sending a kind thought makes a difference.

With Love and Gratitude,
Steve and Sarah

P.S. If you’d like to run/walk with us, here is the race info. We’d love to have you join us.

Courageous Parents Network
“Courageous Parents Network is a destination created by families, for families, to support, guide and strengthen them as they care for very sick children. Here you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children—and get through each moment.”

It’s hard to summarize the profound positive impact that CPN has had on our family. We were first introduced to them by the Palliative Care Team at Boston Children’s Hospital shortly after Emerson’s diagnosis. We’ve stayed involved & have been honored to contribute content to the site during the past year.
(we’re at the very bottom of the page)

Faith’s Lodge
“Faith’s Lodge supports parents and families facing the death or medically complex condition of a child in a peaceful environment to reflect on the past, renew strength for the present and build hope for the future. Faith’s Lodge: A Place Where Hope Grows. In its North Woods setting, Faith’s Lodge provides a peaceful escape for families to refresh their minds and spirits while spending time with others who understand what they are experiencing.”

Last fall, we attended the Faith’s Lodge “Bereaved Parents – Infant & Toddler Loss” program with six other couples from around the country. It was one of the best things we could have done. The long weekend we spent there was very healing, and we have stayed in touch with the other amazing parents we met there. The cost to attend a weekend at Faith’s Lodge is far below the Lodge’s actual operating cost for the weekend (which makes it very accessible for many families). The difference is covered by Faith’s Lodge through fundraising/donations.

Children’s Gaucher Research Fund
“Children’s Gaucher (“go-shay”) Research Fund is a 501(c)(3) charitable organization that raises funds to coordinate and support research to find a cure for Type 2 and Type 3 Gaucher Disease, a progressively debilitating genetic disease that attacks children.
Our mission is to raise funds and unite families to find a cure for Type 2 and Type 3 Gaucher Disease (GD2/3).”

 Emerson died from Type 2 Gaucher Disease. It is a very severe, fast progressing type of GD, and it is always fatal in the first few years of life. Finding out that your previously seemingly healthy baby has a deadly neurodegenerative disease, and that there is no cure, or effective treatment, is impossible to describe. Our specialist in Boston, however, said that he did believe that someday a treatment and/or cure would be found. The Children’s Gaucher Research Fund donates 100% of the funds they receive to the researchers working to make that happen.


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Sarah Shaw 
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