Philippa Silva is the Foundation's family engagement officer. She is also the mother of grown-up triplets. Philippa was one of our first Steps for Sanfilippo recruits and like everyone here at the Sanfilippo Children's Foundation is passionate about progressing research in the Sanfilippo space. Thank you for stepping up Philippa and pounding the pavement this November!
What inspired you to fundraise for the Sanfilippo cause?
"I started working with the incredible people at the Sanfilippo Children's Foundation in February this year and since then have had the privilege of getting to know families living with Sanfilippo. My commitment to support the Foundation's mission is borne from my affection for these families and the urgency to fund research to find a treatment for Sanfilippo Syndrome."
Describe your routine/tactics for increasing daily steps.
"When I get up in the morning, I stay up! No going back to bed for a few minutes. Any opportunity to rack up some steps - park further away from the shops, buy a coffee from a cafe at the far end of the mall, get the remote myself instead of asking someone else to pass it to me."
What inspires you? What makes you sad?
"I'm inspired by the courage and tenacity of families living with Sanfilippo and it saddens me greatly that anyone should suffer due to a lack of treatment options. It's devastatingly sad."
How is fundraising for this cause helping?
"My sincere hope is that STEPS FOR SANFILIPPO can bring together the communities of everyone connected with the Sanfilippo Children's Foundation to raise awareness, broaden our networks, thereby raise awareness and research funds so we can bring an end to the suffering of those living with Sanfilippo Syndrome."
How many steps a day are you averaging?
"A smidge over 10,000."
Why is it important for families of children with Sanfilippo to feel supported in this way?
"Having a child with a disability or a terminal illness can be emotionally, geographically and financially isolating. The rarity of Sanfilippo Syndrome heightens this sense of isolation as there are few others who share this experience. By coming together with STEPS FOR SANFILIPPO, we are reminding our families that they are part of a supportive community beyond their own network of family and friends."
What are you looking forward to most about Event/what are you looking forward to the least??
"So excited about the final outcome of research funds raised. Less excited about plantar fasciitis."