Love for Xavier
Donation protected
Xavier Perusse was born on Oct. 11, 2013. For his birthday this year, we are running an October Race with the goal of raising money for three awesome non-profits that are changing kids lives.
As many of you know, Xavier died from Type 2 Gaucher disease, a rare, neurodegenerative disease. As it is a rare disease, there has traditionally been a lack of funds allocated to research into finding a treatment for this disease. One of the non-profits we are raising money for is The Children's Gaucher Research Fund is focused on finding a cure for this deadly disease. It is a 501(c)(3) organization and 100% of all donations are granted to qualified medical research institutions world-wide under the guidance of their Scientific Advisory Board and other experts in the field.
Learn More here: http://www.childrensgaucher.org/
Not only may this research help kids with Gaucher disease, but it may be applicable to other similar diseases, especially Parkinson's. In fact researchers are currently exploring the connections between Gaucher disease and Parkinsons disease.
Parkinson's Connection | Childrens Gaucher Research Fund: http://www.childrensgaucher.org/gaucher-research/compelling-research/
In addition, we are raising money for another amazing organization called Jacob's Heart. Jacob's Heart's mission is to support the quality of life for children with cancer and other serious illnesses and to support their families in the challenges that they face. Having a child with a serious illness is a difficult road for families. Jacob's heart provides support through counseling services, education, direct financial support when needed, care packages, rides, and simply providing a connection. This organization currently only supports families located in certain parts of the Bay Area, but it really should be nationwide. [ahem - anyone that works for a major foundation, hint, hint.] The staff at Jacob's Heart are some of the most gracious, courageous, caring people I have ever had the chance to meet. Donations to this organization change the lives of so many families that are facing such a challenging time.
Learn more here: http://jacobsheart.org/
Lastly we will be supporting the Medically Fragile Children's Foundation. These guys are awesome-- they enabled outings for the children at the CRC where Xavier lived-- and their mission is to serve children 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. It's hard to travel with all the equipment medically fragile kids have-- this organization enabled Xavier to experience a baby pool on "pool day," brought animals to the CRC for the kids, and did trip to see the holiday lights in the local park at Christmas.
Learn more here: http://mfcfnc.org/
How you can support us:
1. Sponsor Our Run!!- We've set up this website to make the donation process simple and easy: . Whether you can give $1 or $10,000, every little bit helps. I truly believe that we can find a cure in the near future. We received word from the NIH just a few days ago that another child in the Bay area was recently diagnosed with this disease, and it breaks my heart to know what they will go through unless we can find an effective treatment and raise awareness of this disease (Xavier went undiagnosed for months, despite the fact that he was at Lucille Packard). And supporting Jacob's heart supports families and children battling serious illnesses now, whether or not a cure is ever found.
2. Come run with us! - Come join us in Campbell (next to San Jose, California) for the Campbell Zombie costume run on October 31-- red wigs welcome in honor of Xavier's red hair!
Here's the info: http://www.halfmarathons.net/california-zombierunner-halloween-marathon-half-marathon-5-mile/
There is a 5K, 10K, Half-Marathon and Marathon to choose from.... And if you want to join us in helping to raise money for these causes we can enable that! And you may even get a "Team Xavier" t-shirt. We welcome friends of friends of friends of friends.... The more the merrier! Currently, Marc Perusse, Erin (Marc's girlfriend) Analisa and Geoff are all committed to running.
3. Run a Different Race! - If you can't make it to Campbell this year to run with us - pick another race close by, short or long, and help raise money for these awesome organizations! Again, you can fundraise through GoFundMe, and you may qualify for a "Team Xavier" t-shirt!
3. Share This With Others! - We'd love it if you would share this with all of your friends and family. Even better if you include an introductory email at the top explaining why this is an awesome event to support if they don't know Xavier's story!
We are seeking to raise at least $3000 by October 31, 2015. The total amount raised will be split between each organization. Please help us improve the lives of kids facing difficult situations in their lives.
YOU REALLY CAN MAKE A DIFFERENCE!!!!
Thank you so much for all of your support.
Geoff and Analisa
As many of you know, Xavier died from Type 2 Gaucher disease, a rare, neurodegenerative disease. As it is a rare disease, there has traditionally been a lack of funds allocated to research into finding a treatment for this disease. One of the non-profits we are raising money for is The Children's Gaucher Research Fund is focused on finding a cure for this deadly disease. It is a 501(c)(3) organization and 100% of all donations are granted to qualified medical research institutions world-wide under the guidance of their Scientific Advisory Board and other experts in the field.
Learn More here: http://www.childrensgaucher.org/
Not only may this research help kids with Gaucher disease, but it may be applicable to other similar diseases, especially Parkinson's. In fact researchers are currently exploring the connections between Gaucher disease and Parkinsons disease.
Parkinson's Connection | Childrens Gaucher Research Fund: http://www.childrensgaucher.org/gaucher-research/compelling-research/
In addition, we are raising money for another amazing organization called Jacob's Heart. Jacob's Heart's mission is to support the quality of life for children with cancer and other serious illnesses and to support their families in the challenges that they face. Having a child with a serious illness is a difficult road for families. Jacob's heart provides support through counseling services, education, direct financial support when needed, care packages, rides, and simply providing a connection. This organization currently only supports families located in certain parts of the Bay Area, but it really should be nationwide. [ahem - anyone that works for a major foundation, hint, hint.] The staff at Jacob's Heart are some of the most gracious, courageous, caring people I have ever had the chance to meet. Donations to this organization change the lives of so many families that are facing such a challenging time.
Learn more here: http://jacobsheart.org/
Lastly we will be supporting the Medically Fragile Children's Foundation. These guys are awesome-- they enabled outings for the children at the CRC where Xavier lived-- and their mission is to serve children 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. It's hard to travel with all the equipment medically fragile kids have-- this organization enabled Xavier to experience a baby pool on "pool day," brought animals to the CRC for the kids, and did trip to see the holiday lights in the local park at Christmas.
Learn more here: http://mfcfnc.org/
How you can support us:
1. Sponsor Our Run!!- We've set up this website to make the donation process simple and easy: . Whether you can give $1 or $10,000, every little bit helps. I truly believe that we can find a cure in the near future. We received word from the NIH just a few days ago that another child in the Bay area was recently diagnosed with this disease, and it breaks my heart to know what they will go through unless we can find an effective treatment and raise awareness of this disease (Xavier went undiagnosed for months, despite the fact that he was at Lucille Packard). And supporting Jacob's heart supports families and children battling serious illnesses now, whether or not a cure is ever found.
2. Come run with us! - Come join us in Campbell (next to San Jose, California) for the Campbell Zombie costume run on October 31-- red wigs welcome in honor of Xavier's red hair!
Here's the info: http://www.halfmarathons.net/california-zombierunner-halloween-marathon-half-marathon-5-mile/
There is a 5K, 10K, Half-Marathon and Marathon to choose from.... And if you want to join us in helping to raise money for these causes we can enable that! And you may even get a "Team Xavier" t-shirt. We welcome friends of friends of friends of friends.... The more the merrier! Currently, Marc Perusse, Erin (Marc's girlfriend) Analisa and Geoff are all committed to running.
3. Run a Different Race! - If you can't make it to Campbell this year to run with us - pick another race close by, short or long, and help raise money for these awesome organizations! Again, you can fundraise through GoFundMe, and you may qualify for a "Team Xavier" t-shirt!
3. Share This With Others! - We'd love it if you would share this with all of your friends and family. Even better if you include an introductory email at the top explaining why this is an awesome event to support if they don't know Xavier's story!
We are seeking to raise at least $3000 by October 31, 2015. The total amount raised will be split between each organization. Please help us improve the lives of kids facing difficult situations in their lives.
YOU REALLY CAN MAKE A DIFFERENCE!!!!
Thank you so much for all of your support.
Geoff and Analisa
Organizer
analisa baker
Organizer
Santa Cruz, CA