WHY WE GIVE
As many of you know, I lost my husband over 5 years ago before our son was born. In an effort to help cope with the anxiety surrounding my wedding anniversary and help teach James about focusing on gratitude and giving back our family began Give With James. Give with James became our annual campaign to give back to the world around us and each year we select a charity to support together. I am always amazed by how much you all love and support us and are willing to help us change the world a little at a time. This year we would like to honor my dear niece Sara and our cousin Natalie and support the National Organization for Rare Disorders (NORD). Here is a little glimpse of each of their stories:
What if your child was diagnosed with a disorder only 43 other people had? What if the doctor told you that they had finally figured out what was causing your child's delays but that they had no idea what else you could expect? Well for our beautiful Sara that was pretty much the case. For the most part, Sara was a typical baby except she didn't seem to want to crawl with her peers, and this delayed mobility continued as other kids her age were walking and running and she was still struggling to scoot around. After a bunch of scary doctors visits, meetings with specialists and multiple expensive genetic tests we were finally told that Sara has a USP7 mutation. Most of the time a diagnosis leads to answers and treatments, but in Sara's case (the 34th known case of USP7 related disorders in the world at the time) the diagnosis led to so many more questions.
Sara has worked so hard at therapy and as time goes by she continues to teach us to focus on joy and not be defined by other's expectations of what we are capable of. We all write our own stories. We can't wait to see the RARE beauty she will grow up to be.
Natalie has a rare genetic syndrome called Dup15q 11.2 13.1 syndrome (frequently referred to as "Dup15q Syndrome"). Currently there are approximately 1,400 known case of this syndrome worldwide.
Most children with Dup15q Syndrome experience gross and fine motor delays, as well as some degree of cognitive delay, including intellectual disability at the more involved end of the spectrum. Many children also experience speech/language delays.
In spite of these challenges, Natalie is a sweet, loving, hard-working little girl. I know from first hand experience that she brings a unique beauty to this world. I have always been touched by the love her family and her share and the sweet way they communicate with each other.
Please join our little village in raising money (and climbing for a cause) to support families accross the world with children with rare disorders and provide funding for valuable research for these often underfunded disorders.
This year our Give With James campaign will focus on raising money for the National Organization for Rare Disorders (rarediseases.org) as well as 2 team challenges to raise money for the Dup15q Alliance ( https://www.dup15q.org) and the Foundation for USP7 related disorders ( https://www.usp7.org). You can visit these pages for more information on the disorders, and their missions.
We will also be hosting our first official event so we can come together and have some fun as we support Sara, Natalie and other kids with Rare disorders. Want to support our cause? There are 4 ways to do so:
1. Click the donate button to support one of the selected charities.
General Team - Benefiting NORD
Team Sara - Benefiting the Foundation for USP7 related disorders
Team Natalie - Benefiting the DUP15q Alliance
2. Stop by All the Crave Cheesecakes for a yummy treat this May through July. All profits from the sales of 'Give with James' M&M cheesecakes will go to benefit NORD.
3. Reach out to coordinate a silent auction donation (see #4).
4. Join us as we Climb for a Cause and bid at the Silent Auction
Momentum Indoor Climbing Katy
Evening of July 19, 2019 (time TBA)
Requested Contributions for climbers: Adults - $25 Kids - $15
All proceeds from the silent auction go to benefit NORD. You can select from the 3 charities for your climbing donations.
If you can join us, please make your donation on this page AND register through the site below.
Please also consider if your employer has charitable matching. All 3 charities are registered 501(c)(3) charities.
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