Stanford BGAP Study Visit
In late February, our team had the privilege of meeting the team at Stanford to get a first-hand look at the Brains, Genes, and Puberty (BGAP) Study. We learned of the BGAP Study and wanted to know more about the benefits for our community. This was our first in-person meeting as an organization, where we explored the study and met the team that facilitates it. And what better opportunity than to do so at a well-known university, such as Stanford, that is committed to further research which will increase our understanding of Klinefelter syndrome.
The BGAP Study is designed to provide data for a better understanding of the brain and behavioral growth in boys 8 to 13 during puberty. They study the effects of testosterone (not administered as part of the study) and how it affects the brain and behavior over the course of several years. A longitudinal study, such as this, provides a snapshot over time to better understand the effects of testosterone as your child ages. Stanford has adapted its study during quarantine for the COVID-19. The link below is for more information and how to sign up.
A New Chapter: Our Website
Since the very beginning, Ryan had the idea of building an online community where people could go to find up to date, positive, helpful information. The hope was to be able to google Klinefelter syndrome and be one of the first websites before Dr. Google was able to spread fear into the lives of people desperately looking for information. Knowing the very basics about web design from his photography days he set out and built livingwithxxy.com with help from his friend, Daniel.
Our NonProfit was established on November 6th, 2019 and the months leading up to this launch, Ryan was at it again with a whole new website. During this quarantine downtime, he has been fast at work to bring a wonderful new update. He has been transitioning content from his personal page, in an effort to house all the invaluable content and stories into one place.
A brand new blog page has been created with three new sections: Our Community, Jack’s Mom, News & Updates. We have also added ‘Valuable Resources’ which includes resources from: Clinics and Other NonProfits, Education, Careers, Contact us and Testosterone Replacement Therapy. Please be sure to check back often for new blog posts and updates.
Documentary Series & Podcast
In December 2019, we announced we were going to start filming a documentary series in the first weeks of March 2020. Ryan headed out to meet with Daniel who lives in Edwards, Colorado. Daniel is a photographer for Getty Images and has years of experience in photography and film production. Daniel is also a board member. The plan was to start filming with Tom Zittergruen who is 26 years old and lives in Fort Collins, Colorado and was born with Klinefelter syndrome. Tom’s Instagram profile can be found here: @tomsxtravel. Unfortunately due to COVID-19, we had to stop before we were able to begin. Over the last few weeks, we have been working hard on a casting form to help us create a list of people who want to be involved in this series. If you are interested in being a part of this, please click the link called Documentary Casting below.
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This is a wonderful website.
I was diagnosed around 18 years ago at the age of 31. My whole life seemed to come to a standstill with all my previous experiences in life suddendly making sense.
The information available was poor. i had loads of questions that the professionals couldnt answer.
Every so often i make new searches for information to find out what has changed.
I came across this site, it is so well planned, is positive and with the accompaniment of the podcast makes it invaluable.