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The SPSRF Newsletter June 2023

The SPSRF Newsletter June 2023

We're delighted to share our June newsletter with you, packed with exciting updates about our efforts in the SPS community.

This month, we're bringing you an inspiring conversation between Tara Zier from The SPSRF and Lea Jabre, discussin life with SPS. It's an insightful talk you won't want to miss! Alongside this, we delve into the role of nutrition in managing SPS and offer an update on our patient registry. 

We encourage you to read through, learn, and engage. Remember, each of us can make a difference, no matter how small it may seem. Let's continue to strengthen our SPS community together! 


Spotlight on SPS: A Candid Conversation

Tara Zier from The SPSRF joined Lea Jabre on Instagram Live to shed light on living with SPS. They touched upon the essentials of self-care without a caregiver, the power of self-advocacy, and the importance of mental health. 

Get involved and watch the conversation here



Join Us on Our Next Journey: Co-hosting the 2024 SPS Annual Conference

The SPSRF is on the move! We're joining forces with Dr. Machado and Hartford Healthcard to co-host the 2024 SPS Patient Conference. We're thrilled about this opportunity to contribute even more to this important event. Stay connected with us for news and updates as our 2024 conference details are confirmed. 

We'd love to hear your feedback if you attended last month's SPS Patient Conference. Complete the short survey here!


Shaping the Future - Kickstarting the Patient Registry

Our strides in creating a comprehensive patient registry are picking up the pace! We're set to begin our Steering Committee meetings this June, with representatives from patients, caregivers, clinicians, and researchers all collaborating to guide our foundation's efforts. 

Follow us on Facebook, Instagram, and subscribe to our communications to stay current on this critical initiative to learn more!


Sharing is Caring: Tell Us Your Story

Your journey matters. By sharing your SPS experience, you can educate, inspire, and offer hope. We invite you to submit your story, which our team will compile into a patient profile for your review. Once approved, your narrative could be the beacon of light for others. Got questions, Reach out. 

Share your inspiring story here!

A Final Thought - Mark Your Calendar!
  • June 27 - Keep an eye on your email inbox as we'll share a summary and video clips from the 2023 SPS Patient Conference.
  • July 9-16 - Tara's Birthday Fundraiser Kick-off! Join us as we look to surpass last year's incredible efforts, which raised over $10K in honor of Tara's birthday (on July 16)!
  • July 16 - Steven Schartel participates in the Poconos Trail Spartan Trail race to raise donations for The SPSRF. Be on the lookout for wasy you can support Steven!