Tag Archive for: lafora disease research

Image includes a purple rectangle in the background of top third. The Chelsea's Hope Lafora Children Research Fund research roundtable logo is towards the left of the rectangle in white. It has half a bullseye to the left of the text. To the right of the logo's text is a purple line. On the other side, white text says 'Thursday, 8 February 10:30 AM - 12 PM EST.' a darket purple line separates the purple background from the white hexagons that make up the rest of the image. Below that, white text on a purple oval says 'REGISTER IN ADVANCE.' The photo on the left is a headshot of Sharmistha Mitra, Ph.D. with text beneath her name that says 'UT Southwestern Medical Center.' The photo on the right is a headshot of Jeff Milton with text beneath his name that says 'La Jolla Labs, Inc.'

Announcing February Research Roundtable Speakers

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Dr. Mitra and Jeff Milton to Join Chelsea’s Hope Lafora Disease Research Roundtable on 8 February

Image includes two round photos, with the Chelsea's Hope Lafora Children Research Fund research roundtable logo in the center. It has half a bullseye to the left of the text. A line is beneath. Text says 'Thursday, 8 February 10:30 AM - 12 PM EST' beneath the line. Below that, white text on a purple oval says 'REGISTER IN ADVANCE.' The photo on the left is a headshot of Sharmistha Mitra, Ph.D. with text beneath her name that says 'UT Southwestern Medical Center.' The photo on the right is a headshot of Jeff Milton with text beneath his name that says 'La Jolla Labs, Inc.' The background of the image is white hexagons.

We are excited to announce the two speakers that will present at our February research roundtable.

Sharmistha Mitra, Ph.D., is an Instructor in the Department of Pediatrics, Division of Child Neurology at UT Southwestern Medical Center. She joined the UT Southwestern faculty in July 2020.

Dr. Mitra’s objective is to present a comparative murine study of the amylopectinoses of APBD, Lafora Disease, and PGBM1 at the roundtable. She will share a mechanistic understanding of the function of E3 ubiquitin ligases and their associated proteins in glycogen metabolism.

Jeff Milton is the Founder and CEO of La Jolla Labs, a company developing technology for RNA therapeutics. Prior to this, he was Head of Data Sciences at Arcturus Therapeutics, where he worked on several rare disease programs, including both RNA-targeting and mRNA modalities. Jeff currently serves as an advisor to his alma mater, the Mellon College of Science at Carnegie Mellon University.

We are excited to begin the 2024 Research Roundtable series and hope you will join us for an important conversation.

Our Next Research Roundtable

Please join us Thursday, February 8th, from 10:30 am – 12:00 pm EST to learn from Jeff and Dr. Mitra. You must register for the Zoom meeting in advance. We will include a new translation and captions feature for the Zoom meeting. It will not be recorded, although we will share a summary after the meeting.

REGISTER NOW

 

Attendees at the Lafora disease science Symposium 2023 in Bologna

Lafora Symposium 2023 in review

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Attendees at the Lafora disease science Symposium 2023 in Bologna

The 8th Lafora Disease Science Symposium was held October 9-10th, 2023, in Bologna, Italy. It was the largest event yet, with more than 30 researchers, clinicians, and patient advocates gathered to share their expertise on Lafora Disease. The community joined worldwide to work toward improving treatment for Lafora patients.

Thank you to all the attendees

The team at Chelsea’s Hope was grateful to be able to meet in person and connect with our incredible partners and families who support our mission.

Families, you are why we exist. Reaching a cure for our children motivates our work daily, and we know you share that goal. We are thankful to be a part of a committed community worldwide that is fighting Lafora Disease.

To all speakers, thank you for sharing your time and expertise with the Lafora Community at our Symposium this week! Your presentations gave us hope that better treatment options for our patients are coming soon. Truly, we are so grateful for the Lafora research network and dedicated clinicians who collaborate to find a cure for our kids. 

Thank you to the fantastic hosts in Bologna from ISNB IRCCS. You made us all feel welcome, and we look forward to future symposiums in Italy.

We are immensely grateful to our partner organizations, whom we commit to continue connecting with to advance our joint fight against Lafora Disease.

Finally, to all attendees of the 2023 Lafora Symposium, thank you for joining us in Bologna! If you have any photos from the Symposium that you’d like to share, please upload them HERE. Anyone can view the photos there by clicking the link. With a Google Drive account, anyone can upload pictures, too. Use #LaforaSymposium23 on social media and tag us @chelseashopelaforacure!

Connecting with other families and hearing new data, research, and ideas from the Symposium speakers inspired a new level of hope in us as an organization. A key takeaway for us is that together, we can achieve more.

Together, we can fight Lafora.