by Eva Kittay | May 11, 2024 | Stories
On the first Mother’s Day that my daughter, Sesha, no longer lived at home with us, I received a lovely basket with various hand-crafted gifts from her. With help from her aide, she handed it over to me, and as I gushed, she looked so pleased. I am fortunate enough...
by PURA Syndrome Foundation | May 8, 2024 | Annual Conference
We’re counting down to the 2024 PURA Syndrome Conference in Chicago, IL which is only 44 days away! We hope to see you there!! Watch out as we highlight speakers and content over the coming weeks. A great way you can support the conference, while showing off the...
by PURA Syndrome Foundation | Mar 20, 2024 | Annual Conference
This year’s conference will be special in so many ways. One way you can participate is to feature your PURAPerfect Child or your PURAPerfect Relative in the conference program and online! We are now offering families and friends the ability to purchase program...
by PURA Syndrome Foundation | Mar 14, 2024 | Siblings
We are pleased to announce the launch of our PURA sibling outreach offerings! Our Siblings Ambassador, Chrissie Brock, has been hard at work putting together these initial offerings and has many ideas on how to expand them going forward. Our goal is to offer a variety...
by Eva Kittay | Feb 29, 2024 | Awareness
Today we are raising awareness of rare conditions such as the one my daughter Sesha has. It is PURA Syndrome, and it is a one-gene variant that has profound effects. When we recognized that something was not right with our beautiful 4-month-old baby and learned that...
by PURA Syndrome Foundation | Feb 29, 2024 | Awareness, News
Today is World Rare Disease Day! Today is dedicated to raising awareness among the general public and key decision-makers about rare diseases and disorders and their impact on patient’s lives. World Rare Disease Day gives a public and social platform for rare...
by PURA Syndrome Foundation | Feb 14, 2024 | Resources
Hello PURA Families and Caregivers! To help celebrate in the months leading up to the 10th Anniversary of the discovery of PURA Syndrome, the PURA Syndrome Foundation partnered with Behavioral Change Specialist and author of The Kindness Method Shahroo Izadi to create...
by PURA Syndrome Foundation | Feb 8, 2024 | Awareness, News
In a few weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. When an individual is impacted by a rare disease, awareness is critical in increasing support, raising funds,...
by PURA Syndrome Foundation | Jan 15, 2024 | Annual Conference, News
We are in need of sponsors to support our annual conference! In supporting this conference, you provide our global medical team the chance to come together and make plans for future research to benefit PURA syndrome patients. Funds will go directly to funding our...
by PURA Syndrome Foundation | Jan 14, 2024 | Annual Conference, News
Register now for the PURA Syndrome Conference, an event taking place June 21-23, 2024. Join researchers, experts and our PURA community for in-depth sessions that will focus on: Research and studies about PURA Parent Discussions PURA Community Social Time And so much...
