BREAKING NEWS: Our Hope community is making waves with new awareness efforts! Stay connected for updates.
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BREAKING NEWS: Our Hope community is making waves with new awareness efforts! Stay connected for updates. 💚
PTLS Hope Shines Bright at Texas Children’s Hospital for Rare Disease Week 2024
In a display of unity and advocacy, PTLS Hope joined the PRISMS awareness table for rare disease week 2024 at Texas children’s hospital. Offering complimentary merchandise and informational leaflets about Potocki-Lupski Syndrome (PTLS), effectively spreading awareness and sharing valuable insights about this rare genetic condition.
Visitors to the table were greeted with a wide array of PTLS Hope merchandise, including tote bags, water bottles, mugs & stickers all emblazoned with the organization's logo and inspiring messages of hope. These items not only served as tokens of support but also sparked conversations and connections among attendees, fostering a sense of community and solidarity.
In a remarkable show of collaboration, PTLS Hope shared the table with PRISMS, an organization dedicated to Smith-Magenis Syndrome, and MAND Syndrome. This collaborative effort not only amplified the reach of each organization's message but also underscored the importance of unity in the rare disease community.
The presence of PTLS Hope at Texas Children’s Hospital for Rare Disease Week 2024 exemplifies the organization's unwavering commitment to raising awareness, supporting individuals and families affected by PTLS, and advancing research efforts. Through events like these, PTLS Hope continues to make a meaningful difference in the lives of those living with rare genetic conditions, offering hope and solidarity in the face of adversity.
Dr Lorraine Potocki & Dr Sarah Elsea of Baylor College of Medicine, holding their PTLS Hope Research Foundation mugs!
PTLS Hope Research Foundation Advances Mission at MENA Congress for Rare Diseases
The PTLS Hope Research Foundation recently had the honor of attending the prestigious MENA Congress for Rare Diseases in Abu Dhabi, UAE. This event, renowned for bringing together some of the most brilliant minds in the field, provided a unique opportunity for the foundation to network, learn, and connect with researchers and Innovators from around the globe. These interactions have been pivotal in advancing our research programs and spreading awareness of Potocki-Lupski Syndrome (PTLS).
Throughout the congress, the foundation's representatives engaged in insightful discussions and attended a variety of informative sessions. These experiences allowed them to gain valuable knowledge on the latest advancements and innovative approaches in rare disease research. By connecting with leading experts and researchers, the PTLS Hope Research Foundation has been able to gather essential insights that will propel our research initiatives forward.
One of the key highlights of the congress was the opportunity to collaborate with other organizations and researchers dedicated to rare diseases. These connections have opened doors to potential partnerships and collaborations, which are crucial in our mission to better understand and find effective treatments for PTLS. The exchange of ideas and expertise at the congress has already started to bear fruit, with several new research projects and initiatives in the pipeline.
In addition to the scientific and medical advancements, the congress also provided a platform to raise awareness about PTLS. By sharing our experiences and the latest developments in our research, we were able to educate a broader audience about the challenges and needs of individuals with PTLS. This increased visibility is vital in garnering support and resources to further our cause.
The PTLS Hope Research Foundation is excited about the future prospects that have emerged from the MENA Congress for Rare Diseases. With the knowledge and connections gained, we are more determined than ever to advance our research programs and continue spreading awareness of Potocki-Lupski Syndrome. We extend our heartfelt gratitude to the organizers of the congress and all the researchers and organizations that made this event a success. Together, we are making strides towards a brighter future for those affected by PTLS.
Terry Pirovolakis & Souad Messahel, PhD from Elida Therapeutics with Mandy Sunner from PTLS HOPE Research Foundation
snapshots from 4 packed days of presentations at the MENA Congress for rare diseases, highlighting tastes findings in research and innovation for rare diseases & genetic syndromes
Team Makayla represents PTLS Hope on the Summit Centre Autism Walk 2024
In a heartwarming display of spirit and support, Team Makayla proudly wore their personalized PTLS HOPE t-shirts at the Summit Centre Autism Walk.
The event, held to raise awareness and support for autism, was a perfect opportunity for Team Makayla to represent the PTLS HOPE Research Foundation. Their enthusiasm and dedication were evident as they walked with pride, each step bringing attention to the challenges and triumphs faced by those living with PTLS.
A special shoutout goes to Shelly Kroetch, whose creativity and hard work brought the personalized t-shirts to life.
"We are incredibly grateful to Shelly for her beautiful designs and for making these shirts a reality," said a representative from PTLS HOPE. "And a huge thank you to Team Makayla for their incredible support and for helping raise awareness about PTLS."
The Summit Centre Autism Walk was a resounding success. Makayla and her team reminded everyone that every walk, every step, and every shirt worn in support of PTLS brings us closer to a future where understanding and support for rare genetic syndromes are commonplace. Their participation underscores the mission of PTLS HOPE: to fund research, foster community, and spread awareness about Potocki Lupski Syndrome.
Thank you, Team Makayla, for your unwavering support and for being such wonderful ambassadors of PTLS HOPE. Your efforts help shine a light on the importance of awareness and the power of community. Together, we can continue to make strides in understanding and supporting those with PTLS.
Celebrating Mother's Day with Love and Support: PTLS Hope Community Comes Together
In honor of Mother's Day, PTLS Hope Research Foundation launched a special 15% discount sale on all merchandise, allowing families to purchase meaningful items while supporting our cause. Additionally, we offered a complimentary downloadable Mother's Day card, spreading love and gratitude to all the incredible mothers in our midst.
As part of this initiative, Joey Pulley and her beautiful daughter Ava, who has Potocki Lupksi Syndrome, generously modeled our logo T-shirt designs. Their participation not only showcased the bond between mother and child but also raised awareness about PTLS and the importance of continued research and support. Through these efforts, we aim to honor and uplift mothers everywhere while highlighting the resilience and determination of families impacted by PTLS. Together, we continue to unite in love and support, spreading hope and raising awareness one T-shirt at a time.
Queensferry Nursery Goes Green for PTLS Awareness Day!
In a heartwarming display of solidarity, Queensferry Nursery in Edinburgh, UK transformed into a sea of green to mark Potocki-Lupski Syndrome (PTLS) Awareness Day. Staff and children alike embraced the spirit of the occasion by donning green attire and engaging in various green-themed activities.
From vibrant green decorations adorning the walls to delectable green snacks served at snack time, the nursery was alive with the color synonymous with PTLS awareness. Sensory play activities centered around shades of green provided children with interactive learning experiences while fostering awareness and understanding of PTLS.
Parents expressed their delight at the nursery's enthusiastic participation, emphasizing the importance of raising awareness and showing support for individuals and families affected by PTLS. "It's wonderful to see our nursery community come together in solidarity for such a meaningful cause,"
The initiative not only sparked conversations about PTLS within the nursery but also extended its impact to families and the wider community. By going green for PTLS Hope Research Foundation, Queensferry Nursery demonstrated the power of collective action in spreading awareness and fostering inclusivity.
Thank You Queensferry Nursery!
The team at Queensferry wore green & Kai, 3 rocking his green outfit for PTLS Awareness day
