| |  | | | In this edition: - Kleefstra mom, Julie Drake, joins IDefine as Director of Partnerships
- Kleefstra selected for new research study in partnership with AllStripes and NCATS
- IDefine leadership recognized by Global Genes
- Plus a roundup of other KS-related feel-good news
| | | | | | | | Although IDefine was just founded in 2020, it has expanded its network globally, hosted conferences, connected with researchers and biotech firms, raised funding and formed important partnerships with organizations like Boston Children’s Hospital, AllStripes and RARE-X.
Given the rapid growth, IDefine needs more volunteers to sustain – and accelerate – its progress. The latest person to formally join the team is Julie Drake, a Kleefstra Syndrome mom from Naperville, Ill., who has agreed to serve as IDefine’s director of partnerships.
Julie, whose 15-year-old daughter, Amber, was diagnosed with KS in 2016, will work to maintain, leverage and grow current partnerships and work on identifying additional organizations and foundations to work with.
Following several conversations with Julie, IDefine CEO Geoff Rhyne was convinced she would be a great fit for the position. | | | | | | | |  | Kleefstra selected for new research study: AllStripes and NCATS are collaborating for research We are excited to announce that through our partnership with AllStripes, the rare disease research platform, Kleefstra syndrome has been chosen as one of two focus conditions for an upcoming study with the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH). You can see a press release on the AllStripes and NCATS collaboration here. For the study in which Kleefstra syndrome will be featured, AllStripes will capture data on health-care utilization in Kleefstra and another rare disease before and during the diagnostic period, with the goal of providing data on the cost of rare disease, especially for undiagnosed patients. This will help grow understanding of health-care utilization during diagnosis, as well as understanding individuals’ diagnostic journey. AllStripes and iDefine are delighted that the Kleefstra syndrome cohort is the focus of a collaboration with a national research institution. If you haven’t already joined and would like to be part of this and future research studies you can participate by signing up at allstripes.com/Kleefstra. The AllStripes team will collect your records on your behalf, provide them to you in a secure account at no cost, and extract insights to power research. The more we know about Kleefstra syndrome, the more we can do for the Kleefstra community! | | |  | IDefine CEO recognized as a RARE Champion of Hope 2021! Global Genes recognized Geoff Rhyne, IDefine's CEO, as the 2021 RARE Rising Star Champion of Hope this past week at an awards gala in Philadelphia, PA. "I am incredibly humbled to be recognized amongst such amazing and deserving leaders in the rare disease space," Rhyne said. "This award is a testament to our whole team at IDefine: the Board, the volunteers, our families, and our supporters. It means the world to me that more and more people are finding out about Kleefstra Syndrome through our work." | | | | | | | | Quick Clips on Kleefstra - New Website: A huge thank you to KS dad, Haluk Akin, and his business partner, Seda Kamermans, for their efforts on building our beautiful new website! Come see what is happening at IDefine!
- Family Conference: We are working on building out a family focused conference and gathering for the summer of 2022 outside of Chicago, Il! If you would be interested in joining in on the planning committee, please reach out to us at unlock@idefine.org.
- Giving Tuesday: Giving Tuesday is November 30th, 2021, and we are focused on an our gratitude to all of our supporters this past year! If you are thinking about doing a fundraiser, we would recommend doing something on Facebook beginning on Tuesday, November 30, 2021 at 8am Eastern Time. This year, Facebook will be matching qualifying donations to nonprofits until the $8M match runs out! If you are interested in launching an effort, we are happy to offer guidance and support--just reach out!
| | | | | | IDefine, Inc
925B PEACHTREE STREET NE BOX 2173 | Atlanta, Georgia 30309
unlock@idefine.org | | | | | | | | | | | |
