Here's Lauren :)
Happy 2019 Everyone,
Great news from the LMF Foundation.
The summer LMF Weekend raised over $36,500!
In December, we contributed our 2018 annual donation. We donated $45,000 to the International Foundation for CDKL5 Research (IFCR) in Ohio. The IFCR is the central location for families living with CDKL5 Deficiency Disorder (CDD). They have relationships with all the integral medical and research facilities in the United States as well as international. Our donations are earmarked towards projects such as: a CDKL5 Center of Excellence right here at CHOP in Philadelphia, a natural history study also at CHOP, and an international registry for all CDKL5 patients conducted by the Orphan Disease Center (ODC) at UPenn. There are many clinical trials that are currently occurring with the hope of better medicine options to treat seizures as well as models to work towards a cure! Some of the key companies involved in this advancement are Marinus Pharmaceuticals, Amicus Therapeutics, Ultragenyx, Takeda, and Ovid Therapeutics.
The difference between the amount raised at the summer event and the amount donated is credited to people contributing throughout the year, along with numerous company match’s that post at different times. In addition, there are some people who host events to benefit LMF, people who donate to honor a birthday, and friends that sell hats through social media (the green hat went viral this year - you can still get one!!!). We truly appreciate all of these efforts. We want to thank everyone for your continued support because without your generosity and assistance none of this would be possible.
If you donated by check or credit card, you should receive your tax deductible receipt in a separate email shortly. If you do not receive it, please email me.
Mark your calendars for the 10th Annual LMF Weekend…..The dates are July 12 and 13, 2019.
We wish you all a healthy and happy new year and look forward to seeing you soon or on the beaches of Avalon…..Only 110 days until Memorial Day!
Thanks,
Robert, Kate, Mary and Lauren
Please forward this email to anyone who you think would be interested in our cause. If they would like to be added to the distribution list, please let me know.
Great news from the LMF Foundation.
The summer LMF Weekend raised over $36,500!
In December, we contributed our 2018 annual donation. We donated $45,000 to the International Foundation for CDKL5 Research (IFCR) in Ohio. The IFCR is the central location for families living with CDKL5 Deficiency Disorder (CDD). They have relationships with all the integral medical and research facilities in the United States as well as international. Our donations are earmarked towards projects such as: a CDKL5 Center of Excellence right here at CHOP in Philadelphia, a natural history study also at CHOP, and an international registry for all CDKL5 patients conducted by the Orphan Disease Center (ODC) at UPenn. There are many clinical trials that are currently occurring with the hope of better medicine options to treat seizures as well as models to work towards a cure! Some of the key companies involved in this advancement are Marinus Pharmaceuticals, Amicus Therapeutics, Ultragenyx, Takeda, and Ovid Therapeutics.
The difference between the amount raised at the summer event and the amount donated is credited to people contributing throughout the year, along with numerous company match’s that post at different times. In addition, there are some people who host events to benefit LMF, people who donate to honor a birthday, and friends that sell hats through social media (the green hat went viral this year - you can still get one!!!). We truly appreciate all of these efforts. We want to thank everyone for your continued support because without your generosity and assistance none of this would be possible.
If you donated by check or credit card, you should receive your tax deductible receipt in a separate email shortly. If you do not receive it, please email me.
Mark your calendars for the 10th Annual LMF Weekend…..The dates are July 12 and 13, 2019.
We wish you all a healthy and happy new year and look forward to seeing you soon or on the beaches of Avalon…..Only 110 days until Memorial Day!
Thanks,
Robert, Kate, Mary and Lauren
Please forward this email to anyone who you think would be interested in our cause. If they would like to be added to the distribution list, please let me know.
Mission Statement: LMF exists to fund research to find a cure and better medicine options for genetic disorders such as CDKL5 and Rett Syndrome. All monies raised will support institutions and organizations that assist individuals and their families stricken with genetic disorders.
The Foundation was formed in memory of Francis X. Thomas III.
501(c)3 non-profit
Mail tax deductible donations to:
LMF Foundation
526 Kimball Turn
Westfield, NJ 07090
or donate with credit card or paypal account
The Foundation was formed in memory of Francis X. Thomas III.
501(c)3 non-profit
Mail tax deductible donations to:
LMF Foundation
526 Kimball Turn
Westfield, NJ 07090
or donate with credit card or paypal account
