Volunteer Spotlight – Jay Brandrup and Kinetic
With the rollout of the new website, our first Foundation member focus will be on Jay Brandrup, whose Internet development company, Kinetic, is responsible for building the new website.
We talked to Jay about the project, which is actually Kinetic’s second time building the site. Its first major update was in 2005. “Chargesyndrome.org is in the category of ‘information-rich’ websites and it serves a very broad group of stakeholders – from new parents, to donors, to individuals with CHARGE, to students, to professionals.” It has taken effort not only from Kinetic’s web designers, developers, and project managers, but also from the content managers from the CHARGE board and staff. It has been a fantastic collaboration of all the skill sets.” Board members Lisa Weir, Joanne Lent, and Amrit Mehta, along with staff member, Jackie Alshawabkeh have been updating and organizing content for many months to ensure the new site offers the most current information to all the various audiences.
“Jay and the Kinetic team have been dedicated partners helping us get the new site how we want it – they are very passionate about how the web can serve all our constituents and making sure it has a good flow and stays user friendly,” says Amrit. The Foundation regularly depends on volunteer work from its members but when someone is able to use their professional talents as Jay has now and in the past, it is an invaluable benefit for everyone who cares about CHARGE syndrome. “One of the good things about how CHARGE affects individuals in every walk of life, every once in a while, you get a Jay Brandrup who happens to build web sites for a living,” jokes Neal Stanger who initially sought Jay’s help for the web site.
Jay has been involved with the CHARGE Syndrome Foundation since his daughter, Adele, was born in 2004. Like most parents with a newly given diagnosis, Jay and his wife, Julie, were on a desperate search for information on possible genetic conditions when words like “coloboma,” “stenosis,” and “cranial nerves” kept coming into the conversation for their hospitalized newborn. Jay remembers finding the CHARGE Foundation’s website in his first Google search that included “coloboma + heart defect.” Even though at that time, the website had limited information beyond the history and diagnosis criteria, Jay remembers the relief in having a phone number to call and almost as quickly as the Google search had been, founding member Marion Norbury mailed them the new parent packet. “We read the entire packet within the first few weeks of Adele’s NICU stay and continued to depend on it for all our questions. My sister later 3-holed punched it, put each page in plastic sleeves and we took it everywhere, referencing THE Manual,” Jay says with appreciation.
That was in 2004 and soon after Jay was able to use that experience to help the Foundation put the parent manual and other subjects into the 2005 website, along with designing the entire site. He knew how dependent his own family had been on the Foundation and wanted to help provide other parents with the immediate access of the Internet and what Chargesyndrome.org could provide. Over the years of involvement with the Foundation and going to Conference, Jay learned that parent interest is just one of the areas the website needed to cover. Putting all those parts together is what makes Chargesyndrome.org a wonderful resource for Foundation members and the wider audience CHARGE has drawn in the last decade.
When asked, Jay doesn’t remember exactly how he officially volunteered his boutique, fourteen-person company for this task but he knew it was a natural fit. “I’m sure it was at the conference, in a casual conversation, hearing Neal and other board members hoping for a way to economically get a new and improved website,” he says. Since starting Kinetic in Birmingham right out of college in 1995, Jay has always encouraged team members to look for pro bono projects close to their own heart to balance Kinetic’s client portfolio. Whether it is a non-profit for animals, the arts, or something similar to CHARGE syndrome, Jay believes it is vital to his team’s work/life balance to incorporate passion projects into company timelines and budgets. “Advanced website development is very complex, so getting to see how our work directly empowers our pet organizations, no matter their unique goal, is very rewarding,” says Charlie Bice, a project manager at Kinetic.
Jay adds, “I can’t think of anything I am more passionate about than harnessing power of the Internet and combining that with ways to help my daughter and other people connected to CHARGE syndrome. It is very satisfying to be able to contribute my professional work towards CHARGE and the Foundation that has so directly contributed to the well-being of my daughter and our family.”
THANK YOU Jay and Kinetic for your dedication and commitment to the Foundation and for building this new website.