Happy New Year friends. I hope this finds you greeting the start to 2023 rested and looking ahead with optimism and good energy. I am excited by many of the initiatives PPMD has in the offering, not only those supporting research and care advances, but the ones that resonate deeply within the beating heart of the organization: our families.

With this in mind, we are excited to launch PPMD Lighthouse — a wellness and mental health initiative designed to encourage conversation, promote connectivity, and support overall wellbeing.

We know that we are stronger together. We also know building community and connection requires guidance and support; it asks us to have the courage to be seen and heard and to give that bravery to others; it means making a safe, strong harbor for all.

A lighthouse is a symbol of these qualities and a way for us to think of the work we’re doing every day in our homes, communities for the people we love living with Duchenne and Becker. It is our hope that PPMD Lighthouse can help us navigate the turbulent waters of this disease as well as serve as the beacon drawing us closer together.

PPMD Lighthouse Workshops

The first initiative under PPMD Lighthouse is an expansion of a pilot program started during the pandemic. Based on Rachel Callander’s ALLYSHIP program, this pilot brought together a small group of women from various backgrounds. Guided primarily by Rachel and co-facilitated by Kathi Kinnet, Sheila Moeschen, Ellen Wagner, and myself, this group met weekly for eight weeks to unpack a range of topics centering the story of the self and the language we use to form those narratives. At the conclusion of that eight-week session, the group decided they wanted more–connection, conversation, insight, and time together. We ended up convening for another 37 weeks.

It was clear to me that there was a critical need for this specific type of programming, one where people could come together in a safe space to build stronger connections and deepen insights about life and identity that goes beyond diagnosis and management. We have spent the last several months developing the next iteration of this weekly group in order to open it up to a slightly wider participation in the hopes that we can continue its growth and evolution.

Workshop Details

This month we will launch our first Lighthouse Workshop Series. For this iteration, we are inviting women primary caregivers to participate, with the commitment to expanding the series to include men, grandparents, siblings, and others.* PPMD’s Lighthouse Workshops are still very much a pilot initiative and we want to make sure we are creating resources with the most impact. Keeping this first workshop series within a few parameters will allow us to better evaluate it and make changes for the next iteration.

What does this Lighthouse Workshop Series entail? Here’s what you need to know:

• Four groups of women primary caregiver participants, limited to 20 individuals in each group.
• Groups will meet virtually every other week on either Tuesday evening (6-8 PM ET) or Wednesday evening (7-9 PM ET), for a total of eight sessions each.
• Each group will have a facilitator who will guide participants in a focused discussion on various topics related to wellbeing, sense of self, and personal reflection among others.

By committing to a group you agree:

• To attend each session-to be present and to actively contribute
• To keep what is said and experienced in the group within the group-no sharing on social media, please. We will all work together to make the space safe and inclusive
• To open your heart and mind

I am happy to let you know that Rachel Callendar, TEDx presenter, award-winning artist and author, and founder of the ALLYSHIP program which PPMD’s Lighthouse Workshop series is based on, has agreed to join us and will be spending time with each group over the course of the session.

Review the 4 meeting options & register to reserve your spot by January 22nd.

Join PPMD’s Lighthouse Workshops >

If you have questions or need more information, please reach out to me or Ellen Wagner at ellen@parentprojectmd.org.

I am incredibly hopeful and energized for all that lies ahead for our community, and I look forward to the new discoveries we will find together.

* PPMD is launching this first Lighthouse Workshop series with women-only primary caregiver groups, and then will expand to men, grandparents, siblings, and others. If you would like to express your interest for these additional groups, please email ellen@parentprojectmd.org.