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Together we can cure Rare disease

Together we can cure Rare diseaseTogether we can cure Rare diseaseTogether we can cure Rare disease

Help save those who need it the most

DONATE

Together we can cure Rare disease

Together we can cure Rare diseaseTogether we can cure Rare diseaseTogether we can cure Rare disease

Help save those who need it the most

DONATE

Our History

Eleanor "Leni" Kaplan was born a perfect baby in June of 2018.  On her fifth day of her life, she had to be rushed back to the hospital and admitted to the NICU, thus beginning our quest for answers.  Four years ago, she was diagnosed with one of the the rarest and most severe genetic diseases, TECPR2 or Spastic Paraplegia 49, a extremely progressive neurodegenerative disease that is ultimately fatal to children.  It is pediatric ALS. Our hearts stopped, we were told there was no treatment, no hope and most importantly no cure. So we are creating one, and in the process, revolutionizing the current broken model of rare disease drug development. 

Our Mission

There are currently over 12,000 Rare Diseases affecting 400 million people worldwide. Most of these affect young children who will never see the age of 5, what Leni is now.  After realizing that 95% of these have no cure, let alone any form of a treatment, we realized just how big this problem was, so much more than just our Leni. We knew had to help the countless others with similar diseases and no options or hope for a future.  


We have assembled the best team in the world and have done the impossible, creating a successful Gene Therapy CURE that has been developed and working in multiple animal models. This AAV9 therapy uses a virus to remove the defective or missing gene in ones DNA and replaces it with a healthy version, correcting the issue at the core and curing the disease. We have been able to accomplish this by establishing unprecedented partnerships with Dr Steven Gray at UTSW, Harvard Medical School, Boston Children's Hospital, Cambridge University, top biotech's, and the Weizmann Institute of Science in Israel.  


Our next step and most costly, is to have the Gene Therapy manufactured in a large enough batch for a clinical trial. This is where you come in!  The pieces are in place and we have done the impossible, we just need your help for the final push to FDA approval and providing a safe treatment for these affected children.


The Eleanor Kaplan Foundation has accomplished more than 99.9% ever have and with your help to bring this CURE and many others in our pipeline to completion. Through curing TECPR2, we have identified the key breakthroughs in Lysosomal Storage Disorders and Neurodegenerative Diseases. We have made revolutionary discoveries for treatments of many major diseases that affect millions, including Alzheimer's, ALS and Parkinson's.  It has been a very humbling, yet amazing journey of not accepting no for an answer and actually doing what no one thought could ever be done. With this tremendous progress, we have created the network and blueprint for all of the 12,000 other rare diseases. We are paving the way for the future of bespoke medicine and proving that these children's lives matter. We were given a true gift through a devastating diagnosis, and cant wait to help and share it with the world. 

We have full rescue in the brain! Left vs right

Our Journey

Leni was born in Boston Massachusetts, on June 27th, 2018. She was a perfect baby girl, even receiving a rare 10 on her APGAR. It wasn't until a few days later at home, that we realized something was wrong.  She started to deteriorate rapidly, developing severe hypothermia, struggling to breathe and having to be admitted to the NICU. Little did we know just how much our lives were about to change. It took a year and a half of traumatic NICU and PICU stays, missed developmental milestones, recurrent pneumonias, multiple surgeries to address breathing and swallowing difficulties, a ventilator, a permanent feeding tube and a few close calls until we received the diagnosis of TECPR2. It's a terrible disease, eerily similar to ALS in adults, that affects every aspect of her body, worsening every day, leaving us fighting the clock. 


Even with the odds against her and in face of adversity that few rarely see, Leni is the ultimate fighter, who continues to prove everyone, including modern medicine wrong.  Doing the impossible everyday.  Not just walking, but dancing. Not just talking, but singing.  Her love for life and all it entails knows no bounds. She never fails to smile, or to give an encouraging hug. She truly is the captain of, Team Leni!

#teamleni

Partnerships

Ways to donate

  • Donate by credit card, bank transfer, Paypal or cryptocurrency. 
  • Checks can be mailed to: PO Box 480291 Delray Beach FL 33448
  • Contact to gift Stock and Securities


The Eleanor Kaplan Foundation is a registered 501(c)3 non-profit (Tax ID 86-1876534)

All Donations are 100% tax deductible.

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