Tags » Support Groups

Meeting other affected families

There may come a time where you wish to speak and meet other families that have been affected by SMA Type 1. It may be that you find the idea of having friends who have lived through caring for an SMA baby comforting, knowing that they can fully relate to how you feel. 404 more words

Spinal Muscular Atrophy Type 1

The Abyss

I won’t pretend to know what Nietzsche meant by “the abyss gazes into you”. The quote came to mind as I feel like I am at the edge of an abyss, gazing into the void. 255 more words

Countdown to ET Open Day!

Two days to the NTF Essential Tremor Open Day!

For anyone attending the ET Open Day in Oxford by train. you may like to make a note of the following details from the main station to Holiday Inn Hotel. 111 more words

Awareness Days

Where Did Compassion Go?

“True compassion means not only feeling another’s pain but also being moved to help relieve it.” -Daniel Goleman

Have you ever been so moved to speak out about something that it overwhelmed you- rendering you speechless?

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Families Experiencing Loss and Infertility | Resources

From the moment you get a positive test, your dreams and hopes for this new baby comes to life in thoughts of the future, planning, and expectation.  527 more words


Social Media: Falsehoods

I was alarmed to read about falsehoods about health spreading through WhatsApp. It is a Facebook-owned application which has millions of users worldwide. It is impossible to get the actual numbers but suffice to say that it is prevalent in emerging economies. 331 more words


Gratitude with a side of sassy pants...

I cried at work today.  This is my first year in an office.  I have been in education 18 years. There have been so many kids that tug at my heart strings that I could fill books with my stories.  787 more words

Gastric Sleeve