Annabelle's Challenge

Trustee Announcement

Mon, 09 May 2022 20:35:09 GMT

Welcome Bonnie Jackson to Team AC

We are delighted to announce the appointment of Bonnie Jackson to the board of trustees at Annabelle's Challenge.

"I am Bonnie, a MumOnAMission, my daughter Mia was diagnosed with VEDS in August 2021. After finding Annabelle’s Challenge and receiving incredible support from the community I have been able to ‘find light’ within the darkness by fundra ising for AC and raising awareness of VEDS to improve the lives of all of those effected by this condition.

My professional career is within financial services, I have worked at MUFG Bank Ltd for 10 years and my current position is a team lead within the Trade Finance Middle Office. Prior to this I worked for British Arab Commercial Bank also within the trade sector. My most important and treasured role is being a mum to my amazing daughter, Mia."

Welcome to Team AC Bonnie! ��

Jeans for Genes Week

183:750304805 (Jared Griffin) — Fri, 18 Sep 2020 11:52:12 GMT

Celebrating 25 years of Jeans for Genes

It’s Jeans for Genes week, happy 25th anniversary!

Thank you to our neighbours Cosalea café for supporting Annabelle’s Challenge and for wearing their jeans to raise awareness of rare genetic disorders like vascular EDS.

We've Moved!!

183:750304805 (Jared Griffin) — Wed, 02 Sep 2020 12:46:13 GMT

Annabelle's Challenge has relocated from Europa House.

WE HAVE MOVED!!

Our new home for Annabelle's Challenge and Event Hire is now:

Annabelle's Challenge, Walshaw Park House, Walshaw Road, Bury, BL8 1PY.

Telephone: 0161 797 4746

Helpline: 0800 917 8495

Celebrating Christina!

183:750304805 (Jared Griffin) — Mon, 24 Aug 2020 15:46:30 GMT

This week we celebrate Christina's first year as Patient Coordinator.

We celebrate the 1st anniversary of Christina taking on the role of Patient Coordinator for Annabelle’s Challenge, she joined the charity as a volunteer 6 years ago and along with all our volunteers has been instrumental in AC receiving The Queen’s Award for Voluntary Service in 2018.

Christina has taken the initiative to create, lead and drive forward the work of our organisation supporting families affected by vascular EDS.

During the past 12 months we have seen the charity grow to over 300 members.

We are incredibly grateful and proud of you for helping to take AC to the next level and look forward to the new chapter beginning on 1st September.

Newmarket Harley-Davidson

183:750304805 (Jared Griffin) — Thu, 28 May 2020 13:24:28 GMT

Newmarket Harley-Davidson supports Annabelle's Challenge REDS4VEDS campaign

Thank you Newmarket Harley-Davidson for supporting Annabelle's Challenge and REDS4VEDS Day. We love the red Harley #REDS4VEDS

Thank you to North West Ambulance Service Bury

Tue, 21 Apr 2020 21:15:09 GMT

A big thank you to the team at NWAS Bury

Treating the crews at North West Ambulance Service Bury to some well deserved snacks and fresh hot food kindly donated by Crumbs102. A big thank you to everyone at NWAS from all of us at AC.

Update from our CEO Jared Griffin

183:750304805 (Jared Griffin) — Wed, 01 Apr 2020 21:30:06 GMT

Message to our members & supporters

Dear Member & Supporter,

A huge thank you to all our amazing families and supporters across the world for raising an outstanding £117,637 / $145,421 for Annabelle’s Challenge over the last 12 months.

Thanks to your generosity we can continue to support our vascular EDS community during the coming weeks and months ahead through this challenging time.

We have taken several steps to adapt to the current crisis:

- Reviewed our cost base and identified further savings

- Extended the charities reserve policy

- Applied for an emergency funding grant

- Provide daily updates on COVID-19

- Increased support through our helpline, website and social media

- Launched regional support groups right across the UK from April 1st

- Moved to virtual support via the Zoom platform

I have received valuable feedback, updates and suggestions from our vEDS steering group, chair of trustees, regional area support coordinators, our members and clinicians on our medical advisory board.

We have now implemented our revised plans so that we can continue serving our vEDS community, united and focused. We will keep this under constant review in the spirit of continuous improvement.

We are here for you.

Together, we will get through this.

Best wishes

Jared

News update

Fri, 06 Mar 2020 23:40:10 GMT

Well that’s a wrap for this week at AC.

Newsletter has gone out to our members, 6 regional support groups now launched across the UK, 8 area coordinators recruited thanks to one of our amazing stars on the team Christina, now supporting 280 members touched by vascular EDS.

Rare Disease UK reception in Westminster

183:750304805 (Jared Griffin) — Fri, 28 Feb 2020 00:09:51 GMT

Furthering our relationships to help better serve our communities

Comparing notes on the House of Commons terrace with our friends at Aortic Dissection Awareness UK and Beat SCAD UK at the Rare Disease UK reception yesterday.

Great to see our organisations working together to support families affected by arterial diseases.

Pictured: Gareth Owens (Aortic Dissection Awareness UK), Sarah Coombes (Beat SCAD) with Jared Griffin & Christina Cooper (Annabelle's Challenge).

ASDA donate £1,000 to Annabelle's Challenge

Sun, 16 Feb 2020 17:25:36 GMT

Generous customers of ASDA Bury voted for Annabelle's Challenge in the green token campaign over the Christmas period.

Thank you to the customers of Asda for sharing the magic and voting for Annabelle’s Challenge during the Christmas green token campaign helping us to win a £1,000 donation from the Asda Foundation.

Thanks also to Jill Brady, community champion and to Annabelle for collecting the cheque on behalf of the charity.

This donation will go towards funding an excursion for families touched by vascular EDS at our conference in May.

YBS donates £1,000 to Annabelle's Challenge

183:750304805 (Jared Griffin) — Fri, 06 Dec 2019 18:03:30 GMT

Yorkshire Building Society donates towards vEDS conference 2020.

Yorkshire Building Society have kindly chosen Annabelle's Challenge to donate £1,000 towards our children's entertainment weekend at the vascular EDS conference in May 2020.

The conference, the second of it's kind in the UK will see 200 people touched by vascular EDS coming together at the Village Hotel, Bury on 9-10 May.

48 children are already booked onto the conference and will also benefit from a free family excursion on the East Lancashire Railway bringing the community together and to make memories and lifelong friends.

Thanks to the Society’s members and colleagues they largely fund the Charitable Foundation through the YBS Group’s Small Change Big Difference®(SCBD) scheme.

The SCBD scheme invites members to donate the annual pence of interest from their savings or mortgage accounts to the Charitable Foundation. Every penny received through the scheme is used directly to help charities.

Pictured: Annabelle Griffin with Anne Green at YBS, Bury branch.

vEDS UK Steering Group

183:750304805 (Jared Griffin) — Fri, 25 Oct 2019 14:09:03 GMT

New vEDS steering group announced in the UK

We are delighted to announce the new vEDS Steering Committee for Annabelle’s Challenge.

Working directly for the charity and the community we serve. The steering committee will help to shape the future of the charity as it continues to grow providing support, guidance and oversight of progress of all community based projects including events and research in the UK.

The team is made up of volunteers who are directly touched by vascular EDS including patients, parents and carer s, they are also supported by genetic counsellors from the NHS EDS National Diagnostic Service.

Steering committee aims:

• Bring people touched by vEDS together and build strong relationships in and across our community.

• Speak to people and listen to what they have to say in our vEDS community.

• Commitment to equalities and inclusion.

• A willingness to speak their mind yet be respectful of others opinions.

• Active inclusion in the design and decision making in all aspects that affect and ultimately benefit our community including conferences, events, volunteers and research enabling our community to have a stronger voice.

• Enable more people diagnosed with vEDS to fulfill their potential by working to address issues at the earliest possible stage through our family support programme.

• To devote the necessary time and effort to be an effective committee with meetings in person or via teleconference call / virtual meeting.

Welcome to the vEDS steering team:

Patients:
Gemma, Taylor, Rachel & Georgina

Parents / Carers:
Surjeet, Jacqui & Clare

Genetic Counsellors:
Claire, Jess & Tammy

To learn more about the team: https://www.annabelleschallenge.org/veds-steering-committee

UTC South Durham

183:750304805 (Jared Griffin) — Fri, 25 Oct 2019 14:06:51 GMT

£270 raised for Annabelle's Challenge Vascular EDS Charity

Huge thank you to all the students and staff at UTC South Durham for raising an awesome £270 this morning for Annabelle's Challenge.

Great to see Jenson and Regan with the cheque presentation!

"Thank you so much to all of our students and staff this morning who have raised £270 during their non uniform day for Annabelle's Challenge Vascular EDS Charity We had the privilege to meet two of the charities ambassadors this morning, Jenson and Regan who we presented the cheque to!"

Vascular EDS Conference 2020

183:750304805 (Jared Griffin) — Fri, 16 Aug 2019 23:19:54 GMT

VEDS Conference Announced!

We are proud to announce that Ehlers-Danlos Support UK and Annabelle's Challenge Vascular EDS Charity will once again be jointly hosting a UK vascular EDS Conference.

Annabelle’s Challenge and EDS UK jointly hosted the UK’s first vascular EDS conference in 2017, which saw over 100 patients, families and medics attend the weekend.

The conference is due to take place on the weekend of 9th May 2020 at the Village Hotel in Bury, Greater Manchester.

More details of the conference will be announced in due course, but it will follow a similar format to 2017 with a mixture of medical presentations from the EDS National Diagnostic Service and an opportunity for patients and families touched by the condition to meet others, share experience and form lasting friendships.

We would ask anybody interested in attending this event to not book any accommodation or make travel plans until full details of the event have been released.

We would like to thank the Big Lottery Fund for their kind grant, without which this conference would not be able to take place.

Research Study Announced

183:750304805 (Jared Griffin) — Wed, 14 Aug 2019 21:50:23 GMT

Psychosocial issues faced by patients suffering from Vascular EDS

We are delighted to announce our first research study which will commence in September with recruitment taking place this month! Our researcher is Leanne Barrett MSc, a Genetic and Genomic Counselling Student assigned to Annabelle’s Challenge by Cardiff University working closely with Claire Green at the NHS EDS National Diagnostic Service in Sheffield.

This study aims to explore the psychosocial issues faced by patients suffering from Vascular Ehlers Danlos Syndrome (vEDS). Most of the research studies done in this area focus on other subtypes of EDS, with none paying specific attention to vEDS.

Psychosocial issues relate to factors that impact an individual’s psychological and social functioning. By interviewing patients with vEDS, we hope to gain a deeper understanding of the vEDS patient experience, which may in turn, improve the support available to patients provided by healthcare professionals, families and friends, as well as set a base for additional research to take place.

Recruitment is open to AC UK members aged 18 or over who have a confirmed clinical diagnosis of vEDS.

We will be contacting members directly with full details on how to sign up.

If you would like to take part and receive the sign up forms sooner please email research@annabelleschallenge.org or visit https://www.annabelleschallenge.org/veds-psychosocial-resea… for further information.

Skydivers raise over £9,000 for Annabelle's Challenge

183:750304805 (Jared Griffin) — Sat, 15 Jun 2019 13:17:06 GMT

18 Crazy Volunteers, 15,000 ft, Over £9,000 Raised

Well done to both teams for taking to the skies for Annabelle’s Challenge raising an incredible amount of awareness and funds today in Lancaster and Hibaldstow for their charity.

Fantastic effort from the Rizzo family and also to Annabelle’s brothers Ryan and Oliver for taking part.

Great support which is really appreciated. THANK YOU!!

UK Database & Research Announced

Sat, 11 May 2019 11:49:52 GMT

Vascular EDS database and research project

Annabelle's Challenge Vascular EDS Charity is delighted to announce that we and The Ehlers-Danlos Support UK are jointly funding the creation of one of the largest vascular Ehlers-Danlos syndrome (vEDS) research databases in the world.

The funding has been awarded to the EDS National Diagnostic Service at Northwick Park Hospital and is an important step towards undertaking future research into vEDS.

We hope that by formalising and analysing one of the largest vEDS databases i n the world we will gain further insights into what causes vEDS, inspire further research projects across the world, and get us closer to finding a cure. It shows what role patient charities can take in working in partnership with clinicians and researchers for patient benefit. A huge thank you to everyone who has donated to support vEDS research. This project would not be possible without you.

To learn more click here: https://www.annabelleschallenge.org/UK-Vascular-EDS-Research

EDS Awareness Month

Wed, 01 May 2019 14:38:05 GMT

Raising awareness of vascular EDS

It's EDS Awareness Month and each day during May we will be highlighting vascular EDS and sharing stories, news and information to help raise awareness.

We will also be making some exciting announcements during the month and look forward to REDS4VEDS Day on Friday 17th May and also sharing our brand new first ever radio commercial for vascular EDS.

Skydive challenge

183:750304805 (Jared Griffin) — Wed, 06 Mar 2019 12:14:54 GMT

National Skydiving Challenge June 9th

It is looking like Sunday 9th June 2019 could potentially be the date for the first ever Annabelle's Challenge Charity National Skydive!

Thanks to our members and supporters we have so far secured two locations with teams taking part to jump out of plane for AC raising awareness for vascular EDS:

Skydive Hibaldstow, Hibaldstow Airfield, Hibaldstow (near Brigg), North Lincolnshire, DN20 9NN

Black Knights Parachute Centre, Hillam Lane, Cockerham, Lancashire, LA2 0DY

We will add more locations soon, in the meantime if you know of a venue local to you please let us know before you make your direct booking with them.

Reminder: Your Skydive is free subject to raising a minimum £350 for Annabelle's Challenge. As soon as your monies raised are received we will refund the cost of your Skydive including the non-refundable deposit.

https://www.skydiving.co.uk

https://www.bkpc.co.uk/

Happy Birthday Annabelle

Tue, 26 Feb 2019 11:39:35 GMT

Annabelle Griffin turns 10

Yay! Look who’s celebrating her 10th Birthday today! She is such an inspiration for the charity and our special vascular EDS community.

Happy Birthday Annabelle!

Remembering Natalie Paquette

183:750304805 (Jared Griffin) — Sat, 02 Feb 2019 18:23:33 GMT

Today we celebrate Natalie's 16th Birthday.

Natalie Paquette tragically passed away to vascular EDS in July 2015. Natalie was just 12 years old. Today is Natalie's 16th Birthday, please join us in celebrating this special day and enjoy watching her videos.

Happy Birthday Natalie with thoughts and best wishes to the Paquette family. Click here to view the tribute video.

Bacup Grammar supports Annabelle's Challenge

183:750304805 (Jared Griffin) — Fri, 25 Jan 2019 14:32:38 GMT

New project for Q1 2019 at BRGS

Great news from Annabelle’s Challenge, we have been chosen again by Bacup & Rawtenstall Grammar School YR9 as a charity project for 2019.

The team will be helping to raise awareness of vascular EDS, preparing for a presentation and fingers crossed if we get to the finals a £1,500 reward for the charity.

Operation Elf secures £500 for our charity

183:750304805 (Jared Griffin) — Mon, 14 Jan 2019 17:37:25 GMT

Annabelle's Challenge win £500 donation

Annabelle collecting the cheque on behalf of the charity. A big thank you to Mill Gate, Bury and everyone who supported the Operation Elf campaign over Christmas. We came second thanks to the voting by shoppers over the Christmas period giving our charity a welcome boost of £500 to help us continue to support patients and families touched by vascular EDS.

The Queen's Award

183:750304805 (Jared Griffin) — Sat, 15 Dec 2018 19:45:51 GMT

Proud to receive The Queen's Award for Voluntary Service

For Annabelle's Challenge, a fantastic opportunity has arisen..all the charity work that and raising awareness of VEDS has proved to be worth it and they have been nominated for the Queen's Award for Voluntary Service!

When Jared and Sarah's daughter Annabelle had been diagnosed with vascular EDS, they decided to start a bespoke charity that was specifically for vEDS, so that they could raise awareness for the syndrome, as well as supporting the families who may be going through what they had.

It can be a difficult time, especially as it is such a rare diagnosis, meaning that families going through this, appreciate every bit of support and knowledge they can come across. That is where Annabelle's Challenge comes in to support people and bring a bit of light into what can be a particularly distressing time. Providing support and advice to reduce the strain of the diagnosis, free medic alert and financial support to assist families and possible lifestyle changes. The charity also supports research which is absolutely essential with such a rare diagnosis.

Jared and Sarah were absolutely thrilled to have been invited to attend the Buckingham Palace garden party and to be recognised for their progress in making people more aware of vascular EDS. Events and recognition such as this really encourages the medical profession to research more and do everything they can to find a cure!

If you are interested in supporting Annabelle's Challenge or you require some support, get in touch with Jared on 0161 763 8741.

Vascular EDS Family Retreat Weekend

183:750304805 (Jared Griffin) — Sat, 15 Dec 2018 19:33:36 GMT

Over 30 families attend our first ever retreat weekend

Annabelle's Challenge proudly hosts the first ever family retreat weekend for families touched by vascular EDS.

We welcomed 30 families to The Cliffs Hotel in Blackpool for an informal weekend of relaxing, exploring and a good old catch up. A private 'vintage' 1935 tram arrived at our exclusive stop outside the hotel and transported our families on a full tour of the world famous illuminations along the sea front and back.

On the Sunday we closed the weekend off with talks on vascular EDS kindly provided by Dr Neeti Ghali and Fleur van Dijk from the EDS National Diagnostic Centre in London. During the talks family members and carers had the opportunity to ask questions and give suggestions including potential research projects.

The weekend was a fantastic opportunity for people affected by the vEDS to meet one another for the first time and make life long friendships, it was made possible thanks to our sponsors & donors at ELMC Bury District Freemason's and The Leys School, Cambridge in memory of Carl George.

Shaun Wallwork, vEDS family member “Awesome weekend with some amazing people. Well done for arranging it. It was great to hear so many funny as well as heart breaking stories that’s happened to everyone with VEDS