| |  | | |  | Restaurant group serves helping of generosity, raising money for IDefine This is the season of giving, but the owner of the Mecha Noodle Bar has developed a program that allows it to help others all year long, and he is encouraging other restaurateurs to get into the spirit. Tony Pham opened the first Mecha Noodle Bar – which means mom and pop in Vietnamese – a decade ago in Fairfield, Connecticut to pay homage to his mom and dad. He was also motivated to do good. Growing up, Tony’s younger sister had special needs and as the older brother in an Asian household he always felt a responsibility to care for her. “Before I even had the opportunity to open up the stores, I knew that I was going to do something more than just business,” said Pham. “I was going to show how small businesses can make the biggest impact and help others.” Mecha Noodle Bar now has seven locations in the northeast – including two new ones in Boston – and Pham is delivering on his plans through a simple, but powerful program called Eat Justice. Every month, Mecha donates 50 cents of each bowl of ramen sold to support a cause selected by its staff. | | | | | | | | | |  | Call for participation for a sleep study on KS Sleep problems are often reported in people with Kleefstra syndrome. However, little is known about their quality of sleep. The aim of this study is to get a better general overview of the quality of sleep within Kleefstra syndrome. We are looking for participants for an inventory study on sleep within Kleefstra syndrome. Anyone older than 3 years with Kleefstra syndrome can participate in this study. Participation is voluntary. What is required?
We ask you to fill out a questionnaire on sleep and to keep a sleep diary for a period of 2 weeks. Both the questionnaire and sleep diary will be provided and can be completed by the parent/guardian of the participant The questionnaire takes about 30-45 minutes to complete. The sleep diary only requires a minute every morning for a time frame of 2 weeks. Do you want to participate?
Please contact us at sleep.gen@radboudumc.nl For any remaining questions about the study, please contact our research team, led by prof. Tjitske
Kleefstra: sleep.gen@radboudumc.nl In the course of 2023 a complementary study on sleep in Kleefstra syndrome will be launched, led by
Dr. Siddharth Srivastava and Zoë Frazier. Boston-based participants are welcome to participate in both
studies, we closely collaborate and join our efforts here! | | |  | Florida students recognize KS Awareness For the second year in a row, the Marco Island Academy in Florida turned purple around Kleefstra Syndrome Awareness Day in September, and students sold KS Awareness bracelets, held a Big Purple bake sale and accepted donations to raise money for IDefine. The effort was spearheaded by 78 members of the school’s Key Club and embraced school wide. In all, the students raised $1,082. Lori Galiana, the faculty advisor to the Key Club, presented a check for IDefine to Matt and Maria Lockwood, the parents of 5-year-old Wynne, who has KS, when their family visited the school on Dec. 9. “The students have really embraced and connected to this effort,” said Galiana. “We showed the students a video about Kleefstra Syndrome, they’ve explored the IDefine website, and they’ve seen Wynne’s progress, they know her story.” The students became aware of KS through Marie Lynn and Ray McChesney, Wynne’s grandparents. Marie Lynn is an advisor to the Key Club through the Kiwanis. “We love Mrs. McChesney – I think of her as another grandma – so once we learned about Wynne we would do anything to help and got the school involved,” said Taylor Drott, a senior at Marco Island Academy and president of the Key Club. “Once everyone met Wynne last year and saw the impact we could make, they wanted to do it again. We didn’t bring it up, people were asking us when Wynne was coming back.” | | | | | | | | | | | | | | | | Quick Clips on Kleefstra -
Committee Formation: IDefine is pleased to announce the formation of a committee focused on diversity, equity, and inclusion. Would you like to be involved in assisting us with this important initiative? Please reach out to unlock@idefine.org to discuss further! -
2022 Kleefstra Syndrome Census Project: We will conduct this patient census to establish a baseline of where we are as we kick of 2023, and then to conduct a quarterly review to track our community growth. To do this, we will be utilizing the Kleefstra Syndrome Worldwide Map. At the beginning of the month, we were at 103, and we have grown to 248....let's keep growing! Please take the less than 5 minutes to be counted! We look forward to sharing the update and breakdown by country! -
End of Year Giving: We announced on Giving Tuesday, November 29th, that we had a goal of raising $100,000 between then and the end of the year. We are 70% to our goal! 2023 is shaping up to be our biggest year yet in building a brighter future for our loved ones with Kleefstra Syndrome, and we need you and your networks support! Every gift matters! -
Host a Fundraiser and Get Involved: We invite you to lean into our effort to build a brighter future for our loved ones. IDefine is seeking help for conference planning, community development, and fundraising. If you are interested in helping to push our initiatives forward, please reach out today at unlock@idefine.org. Help define a new future! | | | | | | IDefine, Inc
925B PEACHTREE STREET NE BOX 2173 | Atlanta, Georgia 30309
unlock@idefine.org | | | | | | | | | | | |
