|
July, 2024
Hello Reader,
Last month, the MED13L Foundation's board met and voted to elect Katie Boychuck as Chair. Katie has served as a Board Member and Treasurer for the past two years and has also played many roles within the Foundation, from supporting fundraising efforts to welcoming new members to our community. As Chair, Katie Boychuck's goal is to work every day to move the ball closer to a treatment or a cure for MED13L while providing support to our community. Her favorite part of serving on the board is meeting community members, so don't hesitate to reach out to her at kbboychuck@med13l.org. Katie is driven by a profound commitment to making a meaningful impact and believes that together, we can achieve extraordinary milestones for the MED13L community.
We are incredibly grateful to Nick Seaver for his dedication over the past two years. We are even more grateful that he will continue to lend his skills to our community by serving as Treasurer on the board.
We’d also like to continue to introduce our board members to you by featuring a new member each month. This month, our Board Member Spotlight is on Vanessa Dias. Vanessa co-founded the Cure MED13L initiative in 2020 and joined the MED13L Foundation Board in 2022. Read her story below.
With much gratitude,
The MED13L Foundation Board Members
Vanessa's Board Member Spotlight
|
|
|
Our community has made incredible progress in completing the assigned surveys, with four surveys reaching a 100% completion rate: Neuro Quality of Life, Eating Assessment Tool (EAT-10), CNS Bulbar Function Scale, and Cancer. However, we still have work to do to get the other surveys to 100%. If you can only complete one or two surveys at a time, please prioritize the Head to Toe survey and the Behavior survey, as well as the ORCA Measure, which is crucial for understanding developmental needs. The bars in the graph represent the percentage of people who have completed the surveys available on their dashboard, and our goal is to get each survey as close to 100% as possible. Help us achieve this by continuing to provide this essential data! |
|
|
5 Key Tips for Navigating Your Child's IEP
Rebecca Mullen is a MED13L mom and an Assistant Principal at a public school. She shares valuable insights on navigating the complexities of IEPs, emphasizing the crucial role of parents, the importance of being proactive, and strategies for focusing on your child's growth. Discover her expert tips and personal experiences to better advocate for your child's educational needs. Click here to read on.
|
|
|
|
|
MED13L SUPPORT GROUP:
Mark your calendars for August 13th at 7:00 PM ET. Our MED13L Support Group is back with a session we can all relate to: From Summer Sun to School and Therapy Runs: Navigating the Transition.
As we gear up for the new school year and therapy sessions, a whirlwind of emotions is inevitable. This session will be led by our very own Theresa Webster, a certified Psychiatric Nurse Practitioner and proud grandmother to two children with MED13L.
Let's come together as a community to share our experiences and support each other through this unique journey. Only we truly understand what it's like, so let's connect and make this transition smoother for everyone. Email info@med13l.org to register!
|
NEARLY HALFWAY TO 100!
We are thrilled to announce that 40 amazing community members have joined our RARE-X, data collection platform! We are nearly halfway to our goal of 100 members by the end of the year. Why is this important? By contributing to RARE-X, you are helping accelerate research and improve outcomes for those living with rare diseases. Every new member brings us closer to breakthroughs that can change lives. Thank you for your support and commitment! Let’s keep pushing forward together! Have questions? Don't hesitate to email kbboychuck@med13l.org
|
|
|
|
|
3rd ANNUAL MED13L CHARITY GOLF OUTING:
MED13L Mom and Director of Fundraising, Ashley Mort, shares why she hosts the Annual MED13L Charity Golf Outing. It began with her commitment to create a bright future for her daughter, a future complicated by a MED13L diagnosis. Discover how this initiative, driven by community support, has raised nearly $50,000 for the MED13L Foundation, with a goal to reach $75,000 this year. Click the button below to read more and join us at the 3rd Annual MED13L Charity Golf Tournament at Cracklewood Golf Club in Macomb, Michigan, on September 8, 2024.
|
|
|
Next MED13L Family Connect
Coming soon... stay tuned for the date for the next MED13L Family Connect in August!
Rochelle Aubert, MED13L mom to Coral, is excited to meet with other MED13L families in a relaxed environment to talk about MED13L kids and share her and Coral’s experiences. Additionally, Ashley Mort will present on fundraising milestones, goals ahead, and how you can get involved.
|
|
|
Families are Invited to the Cognition in Children with Epilepsy Study
A study with researchers from Imperial College London and Cognitron is looking to see if assessing development and cognition in children with epilepsy is possible through an online questionnaire.
|
Newly Released: RARE Drug Development Symposium Videos
In April, the MED13L Foundation Board attended the Global Genes RARE Drug Development Symposium, networking with rare disease leaders and learning how to advance our research and community support. Missed it or want to catch up? The sessions are now available for you to watch at your convenience.
|
|
|
In search of Sales & Marketing Professionals
Are you a sales or marketing professional willing to share your time and experience? The MED13L Foundation needs your help with marketing and fundraising strategy, newsletter management, and social media marketing.
|
|
|
|
|
“
Finding this group has been a silver lining in a long and hard road of learning how to parent a child with complex needs. I hope we have many more opportunities to meet and build each other up and support the foundation in all its efforts."
— Isabelle Wiemero (Owen's mom and MED13L community member)
|
In Case You Missed It:
MED13L FOUNDATION RARE-X
MED13L PATIENT REGISTRY
|
We are looking for individuals
who have made an impact
in your MED13L Journey.
|
Not subscribed to our newsletters or interested in registering someone?
|
|
|
The MED13L Foundation unites and supports families affected by MED13L, as well as researchers and clinicians, in our mission to discover treatments and ultimately find a cure for MED13L
The MED13L Foundation
P.O. Box 283
Barrington, NJ 08007
Unsubscribe · Preferences
|
|
|
