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raised by 29 supporters
Beth Johnsson avatar
Beth Johnsson

Holding on to Hannah

Bringing together our family and friends' support for Reverse Rett because we WILL hold on to Hannah and reach that cure

raised by 29 supporters

Reverse Rett

We fund cutting edge research to reverse Rett Syndrome for good.

Charity Registration No. 1136809


As we approach the fifth anniversary of Hannah's diagnosis, and enter the fifth year of our fundraising efforts for Reverse Rett, we feel it's probably about time we made it official!

 The past (almost) five years have been (sorry for the cliche) something of a rollercoaster, with ups and downs which continue to take us by surprise on a daily basis. Most of you reading will have read it all before and already know about many of those highs and lows. This is not the place for me to write about those daily realities and challenges again (if you want the emotional pitch, please feel free to go to my blogsite instead, link below!); this is the place for me to say 'thank you' to all of you who have supported our fundraising efforts so far, and to say please, keep on hoping and putting that hope into action. 

   Of course, we all want to see the fruits of our labour, and we know how desperately frustrating it can be not to see those results. If you have raised money for Reverse Rett, in Hannah's name, you may not have been able to see the results. After all, Hannah does still have Rett Syndrome. But trust us, your money IS making a difference: research is progressing, breakthroughs are happening, science is developing. Hope is burning, brightly. If you don't believe me, please go to Reverse Rett's website and take a look:   

   So yes, the past four years have had their highs and lows, but one of the most positive, amazing, humbling outcomes of it all has been finding out what incredible, generous, empathetic people we are surrounded by. Since 2011, our family and friends, inspired by Hannah, have raised £120,000. Not bad. Thank you.

   We're setting up this page because so far, we've just been trying to keep track of all your hard work and money raised, through post-its and the occasional spreadsheet! So we thought we'd try to keep slightly better track of it all, and to bring all your amazing efforts together under one of Hannah's best trademark smiles! We've named it (and our new website) 'holding on to Hannah' because we have always wanted simply to hold on to our daughter and for her to have the chance to be who she is and to hold on to life, free from Rett. 

   So, if you do an event this year, want to make a random donation, need some fundraising ideas, or just want to see what other people are up to, please do come and take a look and visit the linked sites too. Although I'm not writing about the realities of Rett Syndrome today, please don't forget that this is our constant backdrop and that Hannah doesn't have the luxury of putting Rett to one side for one second of the day. Her challenges grow greater all the time and her need for the cure grows more urgent with every day that Rett takes from her childhood.

Thank you for holding on to Hannah along with us :)