Every Cookie is Hope

Every Cookie is Hope

Ten-year-old Dana from Boulder, Colorado, is no ordinary kid. In fact, she’s done something extraordinary in the quest to find treatments for rare diseases. What started out as a fundraiser to help her friend Mila has now turned into a lucrative non-profit cookie enterprise where every batch equals much needed cash for cures.
At RAREfest20, Dana will lead a cookie decorating workshop and answer your questions. She hopes you’ll be inspired to get baking, too!

RAREfest saturday speaker Giles Yeo

How did Cookies for Cures start?
It started when I was 7. At speech therapy I made this amazing friend called Mila. She was really nice and really bubbly. We’d just talk and play together. When I found out she was sick with a rare and fatal disease called Batten, I just had to help her. Me and my mom came up with the idea to sells cookies. That’s how it started. We called it Cookies4Mila. The next year we decided to set up a non-profit called Cookies4Cures. So far, we’ve baked about 17,000 cookies and raised over $100,000. Each cookie is hope.

Why cookies?
Well, I’d never baked before, but I loved eating cookies. Originally, I thought I’d sell cold lemonade but that wouldn’t really work in the winter. We were planning to raise money all year round. Cookies were perfect, because you can eat cookies in the summer, in the winter, when it’s hot, when it’s cold. Who doesn’t love cookies?!

What’s been the response?
Surprisingly, a lot of people say they could never do what I’m doing, but I don’t think that’s true. We can all make a difference. You just need to start!

This is about raising money, but also awareness. Do you think you’re making a difference?
I’m not that well known, but I know I’ve made a difference to Mila’s life. We raised around $50,000 to pay for treatment and that prolonged her life.

How has Mila’s rare disease impacted on her?
She’s a completely different person to how she was when I met her. She can’t see, she can’t talk, she can’t walk, she can’t do so many of the things that she used to be able to do. It’s really tough.

What have you learnt as a result of your work over the last 3 years?

I have two other friends with rare diseases, Ollie and Ben. I’m not sure I’d know about rare diseases if some of my friends hadn’t got them. It’s made me realise that, as a whole, rare diseases aren’t that rare. Doing Cookies4Cures has made me less afraid to speak up and help my friends.

Who is your hero and why?
Greta Thunberg. She spoke up for what she believed was right and she doesn’t let anyone stop her!

Where’s your favourite place in the world and why?
I’m not entirely sure. Probably eating cookies! Mum has a rule on that we can’t eat any cookies until after a bake sale is done.

What is your greatest achievement?
Prolonging Mila’s life. That feels like the most important thing that ever happened. It let me enjoy more time with her.

What is your hope for rare disease?
I hope that one day there’s a treatment for every single rare disease, so no one has to suffer, or watch their friends die or get so sick that they can no longer recognise them.

Dana Perella Cookies for Cures
Dana Perella Cookies for PANS

Healx raise funding to repurpose drugs for rare diseases

Healx raise funding to repurpose drugs for rare diseases

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Congratulations to Cambridge start-up, Healx, co-founded by founder and trustee of CRDN, as it raises $10m to help repurpose drugs for rare diseases.

Forbes and the Telegraph today report that the co-founders of Healx, Tim Guilliams – founder and trustee of CRDN, and British inventor of Viagra – Dr David Brown, have raised funding of $10m for their Cambridge start-up that uses artificial intelligence (AI) technology to find medicines to treat some of the world’s rarest diseases.

The Telegraph states “Dr David Brown, the scientist who developed the blockbuster treatment for erectile dysfunction for Pfizer, is the co-founder of Healx, a UK medical tech startup that uses machine learning to find treatments for 7,000 rare conditions that do not currently have an approved method of treatment”.

 

It goes on to explain why Healx believe that the lengthy traditional drug discovery process isn’t economic for rare diseases and how they hope to accelerate the time to drug discovery and reduce costs through their AI technology driven systems which search for drugs that can be repurposed. 

Dr Brown’s work with Viagra, which was developed originally to treat heart patients, proved that drugs intended to help one condition can sometimes be adapted to treat others. To read the full article click here.

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People’s Health Trust grant makes a world of difference to our Unique Feet group

People’s Health Trust grant makes a world of difference to our Unique Feet group

Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 3

In autumn 2017 we were delighted to be funded by a People’s Health Trust grant using money raised by Health Commit through the Health Lottery to help grow and develop our Unique Feet children’s activity group. People’s Health Trust is an independent charity funded by 51 local society lotteries and the money they raise through The Health Lottery and we are honoured to have received their support.

We’ve welcomed new members of all ages over the last few months and have been getting involved in all sorts of fun. The group began by meeting weekly for yoga sessions with Emily, our trusted Unique Feet supporter who has worked with us from it’s first steps in 2016.
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So why yoga?

As our poster explains, yoga helps children to develop greater body awareness, improves attention span, supports them to develop muscle tone, flexibility, circulation and lung capacity.

The health benefits are significant but benefits come also in their confidence and they learn new skills and surprise themselves at what they can achieve together.  Most of all they have a chance to meet together and have fun!

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The better weather has allowed the group to move on to outdoor activities now and they’ve been taking part in the weekly You Can Bike Too project. This is a brilliant award winning, all-ability cycling project delivered at Milton Country Park and the only project of its kind in Cambridge.

There are a wide range of bikes to suit individuals or groups which are great fun to try.  We’ve been trying out the colourful array of specially adapted bikes to help those with disabilities to take to their wheels and to support others to build confidence in riding.

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Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 7
Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 8
Siblings joined us for a Christmas Party, and for bouncing fun at xtreme 360 trampoline park at Easter and there are horse-riding lessons planned for the summer term.  So much fun to look forward too!

It’s wonderful to see friendships and community developing amongst our local families living with rare conditions who can often feel isolated. The group is a wide mix of children of different ages and all with different conditions.

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Jeans for Genes Day 22 September 2017

Jeans for Genes Day 22 September 2017

Jeans for Genes Day 22 September 2017

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Who’s taking part in #jeansforgenes on Friday? We are and can’t wait to see what our partners get up to Duxford Primary School Cambridge University Health Partners and Association of Medical Secretaries and Practice Receptionist. If you’re down at Addenbrooke’s Hospital Outpatients on Friday they’ll be taking part for CRDN.

Thanks to Jeans for Genes Genetic Disorders UK for the opportunity to get involved.

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Join the Cambridge Rare Disease Network on Jeans for Genes Day 22 Sept 2017

Join the Cambridge Rare Disease Network on Jeans for Genes Day 22 Sept 2017

Join the Cambridge Rare Disease Network on Jeans for Genes Day!

Apply for your free fundraising pack to support Cambridge Rare Disease Network and Genetic Disorders UK.

Did you know that half a million children in the UK are affected by a life-altering genetic disorder? Jeans for Genes Day is an annual fundraising campaign, organised by Genetic Disorders UK (GDUK), to raise awareness and money to transform their lives. This year’s event will take place on Friday 22nd September, and to aachieve an even greater impact, GDUK are partnering with smaller genetic disorder charities like CRDN to help them spread the word, and in return, split the proceeds.

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As hundreds of schools and workplaces take part each year, this is a great way for your pupils and colleagues to feel like an important part of the wider movement to end genetic disorders. For schools, it is also an opportunity for you to educate your students about the science of genetics, to promote equality of people affected by rare conditions, and to highlight the importance of charity and social responsibility.
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Would you or your school or workplace like to take part in this year’s Jeans for Genes Day for CRDN?

All you have to do is sign up on the official GDUK page, choosing Cambridge Rare Disease Network as your partner from the drop-down list, and encourage your pupils or colleagues to wear jeans on the day in exchange for a small personal donation. Extra fundraising iideas, such as cake sales or quizzes, are most welcome too!

Once you transfer the proceeds to GDUK, they will then transfer half to us for everyone we help to sign up. One exception – if you’ve taken part in Jeans for Genes Day in the last three years please DO  take part, but all of the money raised will go to GDUK.

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Need some help? The Jeans for Genes website is packed full of helpful resources like posters, sponsorship forms, educational leaflets, assembly ideas etc. for schoolsnurseries and workplaces a social media pack and arts and crafts ideas.

The of the money donated to us on Jeans for Genes Day will be used to help CRDN develop a regional network and forum of Rare Disease patients and their advocates and families, to support our Unique Feet children and young people’s social group and to run exceptional Rare Disease educational and networking events. Raising the profile of Rare conditions and valuing, celebrating and supporting those living with Rare Disease through life’s journey could be something you and your team or school could help us make this happen. If you have any questions about CRDN or Jeans for Genes Day, please don’t hesitate to get in touch.

Parachute Jumping for Cambridge Rare Disease Network

Parachute Jumping for Cambridge Rare Disease Network

Six incredible ladies, Helena Baker, Zoe Napier, Emily Mortimer, Lisa Griffin, Caroline Churn and Juliette Newton will be parachute jumping for CRDN on the 4th June!


We’ll be there to cheer them on and watch them fly at Beccles Airfield, Norfolk. Please help our courageous ladies achieve their £1,800 fundraising target by donating through
 Helena’s Just Giving page, Emily’s Just Giving Page and Zoe’s Just Just Giving Page.

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So why CRDN?

Helena Baker is Vice President of the Nursing Medical Research Network and was one of the key speakers at our event in March 2016, where we discussed the potential need for a rare disease nursing service. Helena was born with Fibular Hemimelia, a rare congenital disorder that left her, in her own words, with one leg shorter than the other– a tiny club foot, lots of missing ligaments in her leg and body, and a fierce determination not to let any of these problems stop her from doing what she wanted in life, except perhaps play hockey.

Helena recalls growing up having more operations than hot dinners, but never received a diagnosis.

Eventually, just before she turned 50, she was told of her diagnosis. Doctors were clear there was nothing her mother could have done during pregnancy that would have changed the outcome. She is sure that having had a diagnosis earlier would have made a world of difference to her parents. Helena has been recovering from more surgery having had her right leg amputated below the knee last September and is currently learning to walk again. She is continuing to make a great recovery as she’s getting to grips with her new prosthetic leg.  Unfortunately there’s been a slight set back with Helena breaking her remaining ankle.

Helena says “On the day, I’m not allowed to jump wearing my prosthetic leg and I’m also not allowed to land on my recently broken one remaining ankle.  So I’m going to land on my instructor who will be delighted.  I’m planning on testing them out beforehand for looks and comfort.” Helena’s grit and good humour never cease to astound us. She reassured us  “We are approaching our impending doom in the spirit of total denial, all desperately trying to pretend that it’s not happening”.

 

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That’s the spirit Helena!

Because of her strong belief that having access to a rare disease nursing service would have been a huge support to her and her family, she has decided to take on a parachute jump on Sunday 4th June 2017 at Beccles Airfield alongside Zoe Napier, Emily Mortimer, Lisa Griffin, Caroline Churn and Juliette Newton, to help raise funds for CRDN towards their goal of establishing such a nursing service for those with rare diseases.

Thank you for your support and good luck and a huge thank you to Helena & her team!