Passionate, experienced KS grandparent assumes leadership of Kleefstrasyndrome.org

Wendy Hocking has spent a good portion of her career working help people struggling with homelessness and related challenges. It’s work that she is passionate about.

However, in April she took on a new job that she says “makes me tick, tick, tick inside, I could do this all the time.” That job is as the unpaid chair of KleefstraSyndrome.org based in the United Kingdom.

Wendy’s first grandchild, William, was diagnosed with Kleefstra Syndrome just after his first birthday in 2014. Earlier this year, while surfing KleefstraSyndrome.org for updates she saw that its founders, Chris and Fiona Heslehurst, were stepping back from their chair and trustee roles to concentrate more on their family 12 years after creating the organization and helping countless families.

“I’ve managed charities throughout my career, so I couldn’t help but think how wonderful it would be if I could help families and people, like William, who have difficulties and special educational needs who need extra support. I thought it would be a good thing, so I couldn’t really say no, and luckily they wanted me, which is nice.”

She first heard of the charity through William’s Mum and Dad, Paul, and Emma. The Charity provided their first information about Kleefstra Syndrome and connected them with other KS families at conferences in 2015 and 2018.

Wendy says she feels an obligation to Chris and Fiona to maintain KleefstraSyndrome.org and move it forward. As a grandmother without day-to-day responsibilities of caring for a child with KS, she says that this gives her the time to support the charity fully, which parent volunteers don’t always have.

She plans to use her connections and knowledge to ensure the families have access to relevant information, helpful support links, the latest medical updates, and the opportunity to meet other families with children and young people diagnosed with Kleefstra Syndrome.

KleefstraSyndrome.org is a charitable incorporated organization, but among Wendy’s priorities is having it become an official registered charity with the Charity Commission in the UK, which opens the doors to additional grant funding opportunities. And now that there are more diagnosed KS cases, the board is also planning to arrange regional conferences and meet ups, so people don’t have to travel as far to attend them.

Although KleefstraSyndrome.org is not a research charity, Wendy believes it has a key role to play in helping researchers.

“We have access to parents and families that have this condition. So, we want to promote families engaging with the research and sharing their information. Without research, there’s no geneticists moving things forward, and we won’t find cures or better understand what’s going on.”

Wendy joins a monthly call organized by IDefine that brings together the medical teams at Boston Children’s Hospital and Radboud University Medical Center in the Netherlands to discuss what they’re working on and other relevant information.

“A lot of what is discussed is well above my head, but I try to pull out of it the bits that are relevant and grasp the information to give to our families and share with the board. One of the things we’ve discovered is we need to translate what the geneticists tell us and what medical terms mean in normal words because we don’t always understand it. So, I think that is one of our roles.”

KleefstraSyndrome.org is also co-hosting monthly online “It Takes a Village” events aimed at educating, informing and community building. Topics have included addressing sensory issues, music therapy and meeting the Kleefstra Clinic team at Boston Children’s.

“We see that working together is for the better. There’s no point in duplicating anything. I feel that we can gain from IDefine, and hopefully IDefine can gain from us. You can’t do it all on your own.”

To that end, while Paul and Emma focus on caring for and working with William on a daily basis, Wendy is focused on supporting them as William’s grandparent, and other KS families as Kleefstrasyndrome.org. chair.

Despite William’s challenges, being non-verbal, and only being able to stand for a few minutes at a time, and sensory issues, Wendy says that he is a very happy boy who loves music and has a great sense of humor.

“If we make a mess, an error, or trip, or anything like that, he giggles his head off. You know, if he fell over, he wouldn’t cry, he would just laugh.”