mail2

NMOtion Blog

Discussing NMO Research and Advocacy

Dear Katelijn & Filip,

There are no words that can express our deepest sorrow, nor any words that will make the profound loss of beautiful Olivia any easier to accept or understand.  She was and is a beacon of light and hope to your family, and to us — her NMO family.  With you, she enriched the lives of NMO friends and families around the world.  We can only hope that she and you feel solace in the knowledge that even the brief time we shared with her has permanently changed us — each for the better.

The truth is that Olivia and every life affected by or lost to NMO are why we move forward… why we will not give up.  We will never ignore or forget the pain of losing Olivia — but rather bear her great loss — and in doing so redouble our resolve to find cures.  In this way, Olivia will be reflected in every life saved and improved as we today travel this road together to end NMO.

In time we may come to understand what we cannot know today.  For now, we honor Olivia, and all affected by NMO by doing our best each day — not only to solve NMO — but to live boldly and fearlessly, and with joy as Olivia so gracefully did.

Olivia lives in each of our hearts & minds.

With enduring love,

Victoria, Bill and Ali

Join the Discussion

Deisy Madero says:

Oh mi dios, he quedado impactada al leer la carta, si bien es cierto que no la conocí, también es cierto que vivía su historia al igual que todos los afectados con esta enfermedad (pacientes y familiares) a pesar que la gran mayoría de los registrados en esta Fundación no nos conocemos, todos vivimos la historia de cada uno de nosotros. Hoy tenemos un Ángel que nos cuida, estarás en nuestras oraciones.

Jenny_Gran says:

Olivia will always be in my thoughts. I never had the chance to know her but know of her and I am so fortunate for that. Family, Friends in my Prayers.

Leave a Comment

  • Learn About
    Clinical Trials

    Learn how clinical trials work, whether or not you're eligible to participate, and the possible risks and benefits.

  • Advocate

    A disease is not rare if it affects you, so get the resources you need to join the community and get NMotion to solve NMO!

  • Give Blood

    If you know someone who has been diagnosed with NMO, please help us with blood samples and/or clinical data donations to our Biorepository.

The Power of Rare.

Power of Rare Book Cover

Victoria Jackson’s new book, THE POWER OF RARE: A Blueprint for a Medical Revolution, shares how a revolutionary model was created to speed discoveries that help empower patients and save lives.

No Thanks