Everlum Bio

06/05/2024

Caregivers!

This one’s for you.

Empowering Caregivers

Join our course, "From Surviving to Thriving: Building a Community to Support Mental Well-Being," designed specifically for caregivers of children with neurologic conditions. Learn practical strategies to manage stress, strengthen relationships, and find support within a community.

Registration opens June 3, 2024

Learn more and prepare to enroll at the CNF Learning Portal!

🔗 https://twtr.to/DtQte

06/01/2024

Tomorrow!

🌟 Celebrating Strength and Resilience 🌟
June is here and Everlum Bio is here to show our support celebrating🥳 those in the arena with CDKL5, FSHD, PKU, and CAH. And for those caring for these incredible people, we've got you too.🫶 This is your special month! 💪❤️

We'll be bringing awareness and resources for each of these rare diseases this month. So look for us, visit our page and tell others!

And...if you're looking for a way through your obstacles of discovery and treatment, you can contact us about "The Everlum Way" and leave us a note here
https://everlumbio.net/contact_us.html or here Everlum Bio!

05/31/2024

Are you, your child or someone you know affected by MCOPS12?

Check out this opportunity to enhance study of therapies to treat this condition! Contact info in graphic below.

If you’ve hit obstacles for your own discovery and treatments, contact us and let’s see how we can help! https://everlumbio.net/contact_us.html or hit us up here Everlum Bio.

🙌Excited to announce our Natural History Study has officially been launched!

We are now looking for Patients to participate to contribute to MCOPS12 research.

👀 Check out our flyer below!

05/29/2024

This Friday...

WEBINAR ALERT 5.30.24 11am ET

Please join us Thursday, May 30th at 11am ET for a Research Chat with KdVSF CSO Dr. Anna Pfalzer! She will be speaking with Dr. Yann Herault, one of our current KdVS Investigator Grantees! Tune in to hear the latest update on his lab’s project!

Register here:

[https://us02web.zoom.us/webinar/register/WN_6Vhc4sJhT2WtE6ynxcCWvA](https://us02web.zoom.us/webinar/register/WN_6Vhc4sJhT2WtE6ynxcCWvA "‌")

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05/29/2024

This may be for you...or someone you know...or both!

🚨 Can’t attend our July CACNA1A Conference in-person?

Join us from the comfort of your home by buying a virtual ticket before prices go up on June 1st. With a virtual ticket, you will have access to all the main sessions in real-time, can ask questions of the presenters and can access all the recordings on-demand after the event.

On July 19th & 20th, families, clinicians, researchers and advocates are gathering together to share CACNA1A resources, research updates and more.

🧬 You don’t want to miss this content. Buy your tickets today by visiting: https://www.cacna1a.org/cacna1a-conference-2024

05/21/2024

My mamma told me..."sharing is caring." So here you go.

Your turn...share this link! https://www.facebook.com/cureGRIN/posts/pfbid05oQjQe2CqTM5mrLT3pZTLC7qjA1Cc2GwaWV8QDnQYiCeQZJbq8E9RPgEqxjR1RDpl

Don't forget to register to attend our May GRI Community Chat Tomorrow, May 22, 5p EDT | 10p BST -> https://bit.ly/3JQBxd2

Click here to check out 2024 dates for the rest of the year -> https://bit.ly/3tXN5H4

At our monthly GRI Community Chat, you'll find a safe space to connect with people who understand what you’re going through. Our virtual gatherings are relaxed spaces for community members to get to know each other and share resources.

• Join calls as often as you want
• Leave your camera off if it makes you feel more comfortable
• Hang back and just listen

You’re not in this alone.

Whether this is a new diagnosis or you have been navigating this disorder for many years, you can find support and valuable information at our gatherings.

05/21/2024

Ultra curious??? Check out this live stream from EveryLife Foundation for Rare Diseases, happening now! https://bit.ly/3crHRGd

Here's the deal...The designation of a disease as 💖"ultra rare" impacts funding, research attention, and the development of treatments. Often making these rarer conditions even more challenging to study and treat. Ultimately, it makes life for those living with and caring for those with an ultra rare disease...that much more difficult. Can you imagine?

Today’s the Day! will start soon! Don’t miss your chance to dive into the latest advancements in drug development for ultra-rare diseases. 🧬

Tune in and watch presentations by experts from FDA, The National Institutes of Health, (Institute for Advanced Clinical Trials for Children (I-ACT for Children), Chan Zuckerberg Initiative and more!

Please join us virtually here: https://bit.ly/3crHRGd