Cure SPG4 Foundation

09/13/2025

https://youtu.be/VUAl6VAXCSE

Ellis and Connor will be at the Texas A&M vs Notre Dame football game in South Bend today! While they will be cheering for different teams, they continue to fight for every step in their battle against SPG4 hereditary spastic paraplegia. Ellis and Connor are fighting...will you fight with them? Aggies and Irish, donate today in honor of Ellis, Connor, and your favorite teams! www.CureSPG4.org/Donate

Ellis and Connor will be at the Texas A&M vs Notre Dame football game in South Bend today! While they will be cheering for different teams, they continue to ...

02/28/2025

Today is Rare Disease Day. is recognized annually on February 28th to bring awareness to the 300 million worldwide living with a rare disease. SPG4 Hereditary Spastic Paraplegia is one of over 6,000 rare diseases. No disease is too rare to matter. Today, we stand together to advocate for better access to diagnosis, treatment, care, and opportunities for those living with a rare disease. Join us in raising awareness and showing support for those living with SPG4 Hereditary Spastic Paraplegia. www.CureSPG4.org

02/13/2025

Cure SPG4 Foundation is proud to support ongoing research efforts for the SPG4 gene therapy initiative. In 2024, Cure SPG4 Foundation contributed $86,000 towards the project which supports the multi-institutional team of researchers from Boston Children’s Hospital, UMass Chan Medical School, University of Wisconsin-Madison, and Drexel University. Alongside The Lilly and Blair Foundation and SPG4 Cure Fundraiser, we have been able to fully fund Aims 1 through 3. Critical funding is still needed to support Aims 4 through 7 on the path to a clinical trial. Thank you so much to every donor who has given so generously to make this research happen!

In addition to gene therapy, Cure SPG4 Foundation has also committed $25,000 to support The Baas Lab at Drexel University. This research is complementary to gene therapy and will focus on therapeutic options to stop and potentially reverse SPG4 disease progression. We are excited to partner with SPG4 Cure Fundraiser, The Lilly and Blair Foundation, and Maurya Koduri Foundation to provide a combined total of $100,000 in support of this work.

ALL of this progress happens because of YOU! Let's keep pushing reaching forward TOGETHER and find a CURE for SPG4!

Donate today at www.curespg4.org

12/07/2024

Grateful for a full day of meetings with the SPG4 research teams and to be able to meet other amazing kids in the SPG4 community. Thank you to the Lilly and Blair foundation for helping to organize the 3rd annual SPG4 Scientific Symposium for SPG4. We are hopeful that the progress discussed and the collaboration will help lead to a cure and treatment.

12/04/2024

With your support, Cure SPG4 Foundation provides funding to support SPG4 Hereditary Spastic Paraplegia research. The result? SPG4 gene therapy development, large and small animal studies, clinical preparation for future human trials, small molecule compound in vivo and in vitro studies, M1 antibody study, biorepositories, and natural history studies.

The work is not done. Every single dollar makes a HUGE impact! Please consider supporting Cure SPG4 Foundation this giving season. We appreciate your support!
www.curespg4.org

04/18/2024

Thank you to each and every person who donated during the 2023 Giving Season! With your help, Cure SPG4 Foundation was able to issue a grant to Drexel University in March of 2024 for the development of a purified monoclonal M1 antibody. The research does not stop here! If you would like to continue seeing tangible progress in SPG4 research, please consider joining our cause and donating today! More info at www.curespg4.org.

02/29/2024

Today is Rare Disease Day! Please join us in bringing awareness to rare diseases and the crucial need for research. SPG4 Spastic Paraplegia is one of many rare diseases with no treatment options. Cure SPG4 Foundation's mission is to change this statistic by fundraising to support important research studies that focus specifically on treatment options for SPG4.

It takes a village and we are thankful for ours! Please get involved by sharing our posts, donating to SPG4 research, and participating in medical research studies. For more info: www.curespg4.org

12/05/2023

Thank you donors for showing up BIG this Giving Tuesday! We have raised $14,687 in one week! Your support is greatly appreciated!

Today is the last day for your donation to be matched by an anonymous donor. Today is a great day to participate and make a difference. Whether $5 or $500, TOGETHER every dollar counts!
Like, Share, Donate!
www.curespg4.org/donate

11/28/2023

Cure SPG4 Foundation is committed to finding a cure for SPG4 Hereditary Spastic Paraplegia, and with the help of generous donations, we have been able to make a significant impact on SPG4 research. However, the work does not stop here. Will you join us and support the cause?

Real change starts with the decision to act. In the spirit of Giving Tuesday, an anonymous donor will match up to $20,000 in donations made to Cure SPG4 Foundation between November 28, 2023 and December 5, 2023! Any donation, no matter how big or small, has the power to make a BIG difference! Cure SPG4 Foundation is run entirely by volunteers and 100% of donations are tax deductible and go directly towards SPG4 research. Thank you for your support!
www.curespg4.org/donate

09/28/2023

Exciting work continues for the SPG4 AAV9 gene therapy project. The Gray-Edwards Lab at UMass has identified naturally occurring SPG4 carrier cattle that are excellent test subjects for AAV9 gene therapy, as their size and symptoms are much more comparable to humans. Cure SPG4 Foundation has awarded a grant in the amount of $40,000 to purchase 4 SPG4 carrier cattle and provide additional support for the breeding process. The UMass team will breed a large stock of SPG4 cattle and continue to test their promising AAV9 therapeutic vectors.

$35,000 in funding is still needed to support this effort for the next year. Will you help us meet our goal?

A fundraising campaign specific to this project has been created so that 100% of donated funds will go directly to the AAV9 large animal study.
Donate online: https://curespg4.kindful.com/?campaign=1271350

05/27/2023

The Drexel/UMass team continues to show positive results with AAV9 gene therapy in mice affected with SPG4. The 6 month results include statistically significant improvement in walking mechanics and gene expression. Drexel is working towards publishing these results, and the team continues to compile evidence for safety and efficacy to prepare for future human trials. Cure SPG4 Foundation awarded a $50,000 grant towards this project in January 2023 to cover costs through June of 2023. Please consider donating to help us award a second grant to Drexel University in July to cover gene therapy project costs through the end of the year! www.curespg4.org/donate

04/10/2023

Cure SPG4 Foundation recently awarded a grant in the amount of $46,500 to Ozdinler Lab at Northwestern University to support ongoing studies on the effectiveness of NU-9 to treat SPG4 Hereditary Spastic Paraplegia. Thank you to each and every donor for making this possible. Your support has allowed Cure SPG4 Foundation to fund $130,000 in NU-9 studies since we started the collaboration with Dr. Ozdinler in July of 2021. The work does not stop here! We are continuing fundraising efforts to support the next round of research this year and would appreciate your support. Donations are vital to pushing SPG4 research forward and providing opportunities for future treatments! www.CureSPG4.org/Donate