IAN’S STORY – A Tribute to Natalie

Nov 10
Ian is 30 and lives with A-Typical Familial Partial Lipodystrophy.  Through social media, he met Natalie who shared the same rare mutation of the condition.  Despite Ian living in the UK and Natalie in the USA, they formed a very close bond.  Natalie sadly passed away this year, aged 40.  In

EVENTS: Climb Annual Conference, October 2017

Nov 02
Over 150 patients, families and professionals attended the latest Climb Annual Conference which took place on Saturday 14th October 2017 in Birmingham.  Our conferences are a way for us to engage key professionals and partners to share with us the latest developments in the world of Inherited Metabolic Disorders,  as well

OCTOBER GUEST POST: Nutricia Metabolics

Oct 23
Crunching leaves. Carved pumpkins. Giggling children. This can only mean one thing – it’s Hallowe’en! At Nutricia Metabolics we love celebrating with food. Our feature recipes this month, Mixed Fruit Brack and Carrot Cake, are a true taste of Hallowe’en. Our Low Protein Mixed Fruit Brack is delicious served on

And the winner of My Metabolic Hero 2017 is…

Oct 17
Reece Blelloch! We were absolutely blown away by the amazing response to our very first Metabolic Hero campaign!  What started off as a seed of an idea; to provide a platform for you to tell us all about the special people who make a difference, and celebrate these unsung heroes

Climb Annual Conference, 14th Oct – Book Now!

Sep 19
We are pleased to confirm the itinerary for the Climb Annual Conference on 14th October 2017 at the Macdonald Burlington Hotel in Birmingham. It’s going to be an informative day with plenty of opportunities to meet and get to know other families, hear from a range of speakers and help

Team Climb take on the streets of London on two wheels

Aug 05
A huge thank you to our 7 Team Climb cyclists Marc Wittenberg, Kevin Hancox, Kate Jenkins, Emily Cullum, Jade Devonshire, Andy Law and Jaq Pearce who took part in the RideLondon 46/100 event on 30th July 2017.  Not only did they take on this fantastic challenge for Climb, but together

RHIANNON’S STORY: Going to University with MCADD

Aug 01
Going from school to university can mean living independently for the first time, moving to a new town, city (or even country!), meeting lots of new people and experiencing the ‘student lifestyle’ of studying and partying in equal measure!  Making all of these changes when you have a medical condition

Charlie Gard

Jul 25
After hearing the latest news on this case, Charlie and his parents are in the thoughts of everyone at Climb. Our thoughts also go out to all those involved in the care of Charlie. Climb exists to raise awareness of Inherited Metabolic Diseases including Mitochondrial Disease. It is important that

The Catwalk comes to Nantwich for Climb

Jul 07
M&Co in Nantwich held a fantastic fashion show in aid of Climb on Wednesday 5th July, which was attended by over 50 people including the Mayor of Crewe, Cllr Diane Yates. Models, including staff, customers and their families and friends from the local community (and our very own founder, Lesley

NEWS: Final NICE decision for Strensiq in the treatment of hypophosphatasia

Jul 07
July 2017 – After a 2 year process Climb is pleased that NICE has published draft guidance recommending the drug Strensiq (also known asfotase alfa) for people with paediatric-onset hypophosphatasia.   The funding agreement between NHS England and Alexion Pharma is based on a 5-year Managed Access Agreement which means that

XLH in the spotlight for Climb’s Patient and Family Day

Jul 03
100 patients, families and professionals came together on Saturday 1st July to discuss the latest developments in X-Linked Hypophosphatemia at a special event hosted by Climb in collaboration with Central Manchester Healthcare Trust. XLH – X-Linked Hypophosphatemia – is a genetic disorder that affects about one in 20,000 people. Typically,

COOPER’S STORY: Living with GSD1a

Jun 20
Meet Cooper.  Cooper is a strong, three year old boy.  If you saw Cooper on the street you would not know that he battles a life threatening condition. At four and a half months old Cooper was vomiting a lot and we assumed that he had an ear infection or

XLH Patient and Family Day – Saturday 1st July 2017

Jun 01
This event is now fully booked X-Linked Hypophosphataemia (XLH) Patient and Family Meeting Climb in collaboration with Central Manchester Healthcare Trust Radisson Blu Airport Hotel (Manchester) Saturday 1st July 2017 9am to 4pm A unique and exciting event, packed with speakers discussing the latest innovations in XLH, along with opportunities

MAY GUEST POST: Nutricia Metabolics

May 26
We are delighted to share another guest blog from our friends at Nutricia Metabolics! With the sun finally making an appearance, it’s time to switch your low protein lunches for something fresh and colourful – our featured recipe this month is a low protein summer salad that you can mix

FUNDRAISING: Jess’s Race Night

May 12
We love to hear about all the fantastic fundraising activities and events that are held by our amazing community.  From bake sales to wing-walking, we are constantly in awe of the efforts that people go to for Climb.  As a small team with a huge job supporting families worldwide with

Climb receives the support of new Mayor of Crewe

May 12
 On Thursday 11th May 2017, we were honoured to attend the Mayor Making Ceremony at South Cheshire College to watch Councillor Diane Yates receive the Chains of Office and Civic Insignia, becoming the fifth Mayor of Crewe. With an interest in supporting homegrown charities, and improving the lives of children,

Rare Diseases and the General Election

May 11
The Department of Health and NHS England recently made a commitment to develop an implementation plan for the UK Strategy for Rare Diseases in England, which is a really positive outcome for those affected by Inherited Metabolic Disorders. With the General Election taking place on 8th June, we want to make sure

Meet Team Climb 2017 – London Marathon Runners

May 01
Our exceptional runners have kindly shared their individual stories of why they took part in this extraordinary event for Climb. We would like to thank Team Climb for all of their massive fundraising efforts, hard work and enthusiasm! Jessica’s Story “I ran the 2016 London Marathon for Climb and absolutely loved the

FUNDRAISING: Team Climb London Marathon 2017

May 01
CONGRATULATIONS TEAM CLIMB 2017 – YOU DID IT!! On Sunday 23rd April, our 18 amazing Climb Golden Bond holders completed the London Marathon! The whole day was incredible with an electric atmosphere, and we couldn’t have asked for more from Team Climb.  This fantastic, inspirational group of people spent many

TRAVEL: Susie’s Story – Our Family Holiday to Dubai with Alex (GA1)

Apr 20
We know some of the challenges that can arise with travelling when you have, or care for someone with, an Inherited Metabolic Disorder.  With the holiday season approaching, we asked some of our families to tell us of their experiences with advice and tips for planning and taking a holiday and we received some really valuable

APRIL GUEST POST: Nutricia Metabolics

Apr 15
We are delighted to share another guest blog from our friends at Nutricia Metabolics! With Easter just around the corner, we have been trying out some new springtime recipes – see our recipe of the month for the perfect addition to your Easter menu! Also this month, we are very

NEWS: Government announces implementation plan for the UK Strategy for Rare Diseases

Apr 01
The Minister of State for Health, Philip Dunne MP, has announced that NHS England will develop an implementation plan by the end of the year for the commitments outlined in the UK Strategy for Rare Diseases. For those affected by Inherited Metabolic Disorders in England this is a fantastic result and

10 Egg-cellent Alternatives to Easter Eggs

Mar 29
Easter is just around the corner and it can be a tricky time of year for families with children that can’t eat chocolate eggs.  No-one likes to feel left out, so we have searched the web and rounded up 10 of our favourite chocolate-free Easter gifts: 1.Lego Easter Chick ~

EVENTS: Guests had a Ball at our Las Vegas Fundraiser!

Mar 24
The glitz and glamour of Las Vegas came to Crewe Hall Cheshire in Cheshire on Saturday 25th February 2017, for the inaugural fundraising charity ball of the Rotary Club of Bentley Cheshire in aid of Climb and Young Minds. The evening began with a drinks reception, the bubbles and laughter flowed! Everyone really

MARCH GUEST POST: Nutricia Metabolics

Mar 24
We are delighted to share the first of our monthly guest blogs from our friends at Nutricia Metabolics! Nutricia are the leading provider of medical nutrition products and a great source of dietary information and advice for families following a low protein diet.  Through their monthly guest blog, they will

KATE’S STORY: Coping with a diagnosis of MCADD

Mar 21
The fourth of August 2016 changed our lives forever.  At 04.04am Thomas Wesley Jackson was born and before we knew it we were going home that evening with our new baby.  The days that followed were scary, amazing, and sometimes overwhelming.  As first time parents we were trying and doing

DAY IN THE LIFE: Rachel Evans

Mar 21
Continuing our Day in the Life feature, giving an insight into the work we do here at Climb, and showcasing the different roles that the team performs, their aspirations, celebrations and the challenges that they face. Today we are putting our Senior Family Advisor Rachel Evans in the spotlight!  Many of you will

NEWS: Climb and The Brittle Bone Society submit appeal on final NICE decision for HPP

Mar 01
Climb has appealed the NICE Review Committee decision not to approve the treatment of severely affected juvenile and adult patients with the treatment asfotase alpha.   Whilst Climb is extremely pleased that the treatment will be available for all perinatal and infantile cases of the disorder under the Managed Access

Rare Disease Day 2017

Mar 01
Tuesday 28th February saw the 10th annual Rare Disease Day; a day for raising awareness of the thousands of rare diseases that affect 3.5 million people in the UK alone. With the theme of research, and the slogan, ‘With research, the possibilities are limitless’, Rare Disease Day 2017 called for

ALISON’S STORY: Living with HHH

Jan 11
Poppy is our youngest daughter. She is a two year old little girl born on bonfire night 2013 and at Christmas 2015 she was diagnosed with Hyperornithinemia Hyperammonemia Homocitrullinuria or HHH. In the beginning Poppy developed well, putting weight on as expected. She smiled, rolled over, crawled and stood when