This month it has been two and a half years since Xavier died. Thank you everyone for the support and love you have offered in the past few years. While our world has been forever changed, we have been given the opportunity to grow our hearts and our understanding of life in ways that would not have been possible without Xavier and his gifts, and the support of our community. Geoff and I have deep appreciation for the richness and perspective Xavier brought to our lives during his short time with us-- he continues to live strongly in our hearts, and we are grateful for the impact he continues to have on our lives every day.
This October 28 we will run the third annual Run for Xavier. As many of you know, last year, we had a number of friends join us in the run – including Joel Oxman who took the Gold in the half-marathon last year!! Congratulations Joel! And most importantly we again raised over $10,000 for the non-profits we support. Thank you again to each of you who donated last year! Many of these non-profits are small, and our donations are a substantial source of support for them.
This year we have several additional runners, including Geoff’s brother Marc Perusse, and Ed and Lucy Perusse! The run offers a way for us, our family and friends to honor our son Xavier who died in March 2015 at the age of one and a half, from Gaucher disease -- to hold him close, while raising money for three incredible organizations who are making a huge difference for very sick kids.
We hope you'll join us either in running for these foundations—and whether or not you run, we would welcome a donation. We'll split the total amount evenly between the three organizations, so if there is a particular one you'd like to support in full, or if you want to avoid the GoFundMe percentage fees, please feel free to send individual checks (see our mailing address below). Here is information on the three organizations we support with our run, along with the additional ways we have been involved with them over the past couple of years:
Medically Fragile Children's Foundation of Northern California- MFCF’s mission is to serve local children (up to 21 years of age), who require medical technology and intervention to sustain life, and connect them with the innate experiences associated with growing up, just as their peers without such limitations experience.. This includes kids with tracheostomies like Xavier had or who rely on ventilators or other medical equipment. Many of the children who benefit from MFCF are at the CRC where Xavier stayed for some time. MFCF does things like bring medically fragile kids and their families to the local park for a summer picnic, or to ride the train in Vasona park at Christmas--activities they would not otherwise get to do as each child needs extensive mobile equipment and accompanying medical staff to step foot out of the hospital.
Children's Gaucher Research Fund--This organization gives 100% of its received donations towards the research of Gaucher Type 2, the lethal infantile disease from which Xavier died. They also bring together researchers from around the world for their bi-annual conference which Geoff and Analisa were honored to attend this past year. Two of the researchers funded by CGRF, Ricardo Feldman and Tony Futerman have been making impressive progress in the study of the pathological mechanism of Type 2 Gaucher and possible thereupeutic targets, including publishing recent findings in a number of well-known scientific journals.
This research has implications beyond just the Gaucher disease, as the Gaucher gene is a major risk factor for developing Parkinson's disease. What is learned from studying Type 2 Gaucher disease may also help prevent, ameliorate, or reverse the loss of dopaminergic neurons in Parkinson’s disease. In fact, one of the top scientists from the Michael J. Fox Foundation attended CGRF’s recent conference! Here is a link to CGRF Summer 2017 Newsletter: http://www.childrensgaucher.org/wp-content/uploads/HelpingHands2017Summer.pdf
Jacob's Heart-- JH provides support for families of kids with cancer and other rare diseases. They provide things like groceries, rides to the hospital, psychological, spiritual and emotional support, and if needed, funeral or associated services and grief support. Jacob's Heart has become like family to us, and we are currently working with them to develop a weekend of training for parent mentors and grief support for those parents whose children have died from cancer or a rare disease.
Mailing Address for Checks:
Analisa Baker and Geoff Perusse
204 1st Ave.
Santa Cruz, CA 95062
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