January 3, 2024 Perspective

Supporting Siblings of Individuals with Rett Syndrome

The siblings of children with Rett syndrome often fall in the middle, helping parents with caregiving and being a loving, supportive sibling—all while facing obstacles to their own goals.

The Rett Sibling Scholarship program aims to support siblings of individuals living with Rett syndrome as they pursue their dreams in higher education.

At Acadia, we have been engaging and building relationships in the Rett syndrome community for several years. Our learnings from these engagements have reinforced the importance of siblings and their special role within their families. As the Vice President of Patient Advocacy and Industry Relations, I lead a team focused on learning from the patient communities we serve. This includes translating insights gained into actionable initiatives that meet their needs, throughout pharmaceutical development and beyond. During one “listening session”, we heard firsthand that some siblings of individuals living with Rett couldn’t articulate their needs as they prioritized the needs of their sister or brother above their own. This was an especially poignant moment for our team.

We are very fortunate to have Susan Foley leading our rare disease consumer marketing team. Susan has firsthand experience working with the rare disease community to understand their needs. In partnership with Sue and with the Rett syndrome community, we identified a scholarship program for siblings as a way for Acadia to come alongside families and support them on their journey.

It is a privilege to be able to bring this program to the Rett syndrome community. So often, siblings are the unsung heroes of the family, and it’s an honor to be able to support them as they pursue their dreams in higher education.

Susan Foley, Senior Director, Consumer Marketing, Rare Disease

We launched the scholarship program during Rett Syndrome Awareness Month in October last year. One particular moment that was especially gratifying to me was seeing the reaction from a Rett sibling at an International Rett Syndrome Foundation event who was so surprised when they were given the scholarship invitation-to-apply card and exclaimed, “Wow, this is something that could really make a big difference in my life. Thank you Acadia for thinking of people like me.”

About the Rett Scholarship Program

The scholarship program is open to U.S. residents attending school in the U.S. who have or had a sibling diagnosed with Rett syndrome. We are awarding 10 scholarships of $5,000 to eligible siblings for the 2024-2025 academic year. The application period is open from October 4, 2023 to January 31, 2024.

If you or someone you know are interested in applying for the Rett Sibling Scholarship program or learning more about our company’s commitment to the Rett syndrome community, please visit rettscholarship.com.

Author

  • Bill Keller

    VP, Patient Advocacy and Industry Relations