Action for XP

Could you be our new Fundraising & Events Officer?

Do you have experience in grant writing and community and corporate fundraising?

As part of our mission to secure a strong and sustainable service for the XP community long into the future, we are looking to recruit a part time Fundraising & Events Officer to work alongside our Operations Officer.

Home working with flexible hours, and a chance to make a BIG impact on a small but passionate charity. See link for full details:

👇👇👇👇

https://www.actionforxp.org/news/could-you-be-our-new-fundraising-and-events-officer

Could you join our team?

We are looking to hire an Operations Officer who will be a pivotal in driving our charity forward long into 2024 and beyond.

This is a part time, remote working position with great flexibility and an opportunity to work in a career that makes a big difference to families throughout the UK and beyond.

See link for full details: 👇👇👇

https://www.actionforxp.org/news/could-you-be-our-new-operations-officer

Spread the word!

Today’s Virtual Cuppa will start at the later time of 11.30am GMT

As a family we always jump on an opportunity to raise awareness for XP. This week Andrew has been spreading awareness while on a workplace training course!

And of course, Little Ted - XP went along too 🐻

Reminder that the closing date for the new paid positions is Monday 11th December

Still time to get your covering letter and CV in

Would you love to start the New Year with a rewarding new role!

We are exciting to be looking to hire two members of the team.
See below for the full job descriptions:

https://www.actionforxp.org/news/could-you-be-our-new-operations-officer

https://www.actionforxp.org/news/could-you-be-our-new-fundraising-and-events-officer

Great to see the published data from an extensive study carried out by the UK team featured in the Brain journal.

Wonderful to see airtime being given to better understanding neurological involvement in XP patients. This is a great unmet need for our families so we greatly welcome research in this area.

https://academic.oup.com/brain

Not Found | Brain | Oxford Academic Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide

Would you love to start the New Year with a rewarding new role!

We are exciting to be looking to hire two members of the team.
See below for the full job descriptions:

https://www.actionforxp.org/news/could-you-be-our-new-operations-officer

https://www.actionforxp.org/news/could-you-be-our-new-fundraising-and-events-officer

New year new job?

Could you be our Fundraising & Events Officer?

Read the full job description and application details here:

Could you be our new Fundraising and Events Officer? As part of our long term strategy for succession planning we would like to recruit talented individuals to join our team. Helping us continue to make a difference long into the future.

New year new job?

Could you be our Operations Officer?

Read the full job description and application details here:

https://www.actionforxp.org/news/could-you-be-our-new-operations-officer

Exciting news!! 😁

As part of increasing demand on our services due to increased reach we are now looking to recruit two part-time members of staff to support our Board of Trustees.

Could you be our new Operations Officer, or Fundraising and Events Officer?

Flexible home working, with part time hours and an opportunity to do a job that makes a big difference, while working with a passionate volunteer team!

Download the full job descriptions here:

Operations Officer:
https://www.actionforxp.org/news/could-you-be-our-new-operations-officer

Fundraising and Events Officer: https://www.actionforxp.org/news/could-you-be-our-new-fundraising-and-events-officer

Wonderful to see Xeroderma Pigmentosum on the list!

This would be game changing for early diagnosis

https://www.facebook.com/100063565451191/posts/831045569024284/?d=n

Genomics England announces list of rare conditions to be included in… Find the contact, social media, service desk, and other important information for Genomics England.

A wonderful UV safe activity!!!

A massive thank you to Rays of Sunshine Children's Charity for making Eddison’s dream of indoor cycling come true 🥰

A truly memorable day x x

Dr Richard Barlow, a junior doctor, who also spoke at our recent Family Conference dropped by to say hello at the EADV - European Academy of Dermatology and Venereology. Richard also has Xeroderma Pigmentosm and chairs the Action for XP support group.
2023

We have just wrapped up from this week's virtual cuppa which was a lovely chance to catch up with some newly diagnosed families and share tips and ideas.

A top tip from of one mum today was these affordable thermal base layer long sleeve tops which make for a great UV protection:

Boys Sportswear | Dunnes Stores Your boy will be on top of his game wearing our sports range which includes dry wicking fabrics with stretch for comfort and ease of movement.

Reminder to complete our short survey so we can plan a programme of events to meet the needs of our whole community. If you can, we would greatly appreciate if you could take 5mins out of your day to answer 7 short questions to let us know what kind of events you would like to see in 2024 and beyond 😁

Thank you!

https://docs.google.com/forms/d/e/1FAIpQLSdijfBYog6QpQaTnW58F38gt-u7XjVPtFXUqm2Ze0YsEHof6A/viewform

Whoop!!! Well done Grace and a big thank you for supporting our work.

BIG thank you to Rebecca, Wilbur, Iris, Eunice and Michela for volunteering to support the wider event and give us a presence. A true family affair! 🥰

It’s great to see our new branding out in action.

If you would like to wear our new Action for XP T-shirt and support our work we would love to hear from you.

Email us at: [email protected]

And there is still time to show your support to Grace via her just giving page 👇🏻

https://www.justgiving.com/page/grace-stewart-1693254359957

Part 3 📰 The Karnataka government has set the ball rolling after South First highlighted the plight of a few XP-affected children. The team interacted with Savitha and her family, checked her medical records, and recorded details of her condition. The visit has provided a ray of hope to her, and others with the same condition. Click the link to read the full article: https://bit.ly/44XOeeL

All set for the Banchory Beast Race!

Please show your support for our runner Grace who is taking part to raise funds and to our volunteers who are on site throughout the day.

More photos to follow but in the meantime there is still time to make a donation big or small.

https://www.justgiving.com/page/grace-stewart-1693254359957

Part 2 📰 The report now takes a look at how the local authorities remain blind to XP, which they refer to as "chukki kayle" - translating to "the diease of dots". Read the full article here: https://bit.ly/45imly0

Article alert 📰 This is the first of a three-part investigative report on XP in Karnataka, conducted by South First. Click the link to read about Savitha, a 13 year old living in Kuratti Hosuru village, and Deeksha, a 15-month old baby living in Bhadrenahalli village. https://bit.ly/3Qn1LrY

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is working with researchers at Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany) on the Global Research on the Impact of Dermatological Diseases (GRIDD) project.

The GRIDD Study aims to collect global data on the impact of dermatological conditions on patients' lives. It is the first global, patient-initiated and patient-led impact research project in dermatology and one that measures the true impact of dermatological diseases from the patient perspective.

Your help is needed! As someone living with a dermatological condition, GlobalSkin welcomes and thanks you for your interest in participating in this unique research project where you are the expert and your opinion matters.

The survey will take you around 10 to 20 minutes to complete. Don't worry if you need more time as you can save your answers and login again later.

Get started here: https://www.my.crf.one/en/Public/RegisterSurvey/279e953a-b9be-4b2c-9b5c-f1e32a25bb59

The GRIDD Study is open until September 28th 2023 so there is one week left!

Find out more by watching this 90 second video here: https://www.youtube.com/watch?v=6E601W_msuk&ab_channel=GlobalSkin

Hope everyone has been settling back into school this month 👩‍🏫 What have you been packing in your school bag to help keep you UV protected? 🎒 Comment below ⬇️

Long shot, but...

Are any of our followers (based in the north-east of Scotland) free to help us volunteer at the Banchory Beast Race this Saturday?

As part of our joining the event we have to provide 5 volunteers and a number have pulled out last minute, so we need to fill their spaces.

NO running required, this is just to support with marshalling at our assigned Action for XP obstacle, and volunteers are required to be on site (Knockburn Loch) between 8am and 5pm. (Saturday 23rd September)

You will need warm, waterproof clothing and bags of fun spirit!

Anyone interested email Rebecca:
[email protected]

Any help gratefully received 😁

This weekend Grace will be taking on the Banchory Beast Race to raise funds for our vital work.

Since COVID, external fundraising has all but flat-lined making it extremely challenging to fund our current and future projects.

Please do support Grace if you can

https://www.justgiving.com/page/grace-stewart-1693254359957

Grace's fundraiser for Action for XP Help Grace Stewart raise money to support Action for XP

A core function of the work we do is sending life-saving UV protective face protection and gloves to individuals living with XP around the globe, along with our Little Ted - XP educational bears.

It is always very special for our team when we receive photos and messages back from families who receive these important packages.

Here are some photos and a recent message from Brazil that we are delighted to share. 🥰....................................................................................................
"My family and I are very grateful for sending the UV protection products. My children can now go to school to learn and develop in a really safe way. We love little Teds. Loving hugs, Guilherme and Júlia."....................................................................................................

Note to our supporters: Never underestimate the value of the support you give us. Every penny is spent directly on patient support and care, and this package alone has allowed two young children to be able to leave their home and start their journey into education!! 😁 So on behalf of all of us at Action for XP - thank you for helping us to help others.

Last weekend our Trustee Nicola was extremely honoured to be at the unveiling of a very special portrait of Eddison - painted by the talented artist Jota Leal as part of the Beyond the Diagnosis project.

“Beyond the Diagnosis unites art and science to raise awareness, inspire research and innovation of treatments for people living with rare and neglected diseases.”

Eddison’s portrait will now tour the world alongside many other stunning portraits of other young people with rare diseases, as they show the world the many faces of rare diseases.

So proud of this young man and honoured for him to have been invited to take part!

The lovely Grace Stewart (daughter of our co-founder and Trustee, Rebecca) is taking on the BEAST Race later this month in aid of supporting our XP community through the work we do.

Please show her your support, and donate via her Just Giving page 👇👇👇

Grace's fundraiser for Action for XP Help Grace Stewart raise money to support Action for XP

Have you responded to our survey about future events yet?

With life returned (mostly) back to pre-covid status, we are keen to get back to in person events in the year ahead.

Please take just a few minutes to tell us about what you would like to see from a 2024 event programme 😁

Support group events - understanding your needs As we start to plan our activities for 2024 and 2025, we would like to understand more about what you would like to see from our day-long and residential events. Please complete the following questions to help us ensure we are meeting your needs.

Sensitive video: viewer discretion

Some great awareness from SABC News sharing the stories of twins, Lwandile and Lwanele Mkhonza who both live with a diagnosis of in South Africa

https://www.youtube.com/watch?v=G-3Qh9C8IwA

(GRAPHIC IMAGES) Rare genetic disorder threatens twins with skin cancer Spare a thought for the Mkhonza twins. Lwandile and Lwanele Mkhonza have a rare genetic disorder - Xeroderma pigmentosum. Xeroderma pigmentosum causes skin c...

Many thanks to everyone for your patience while our team (who are all volunteers) are on reduced capacity during the summer holidays.

Nicola and Eunice are working hard to try and process any outstanding requests which will all be shipped throughout September.

We appreciate your understanding 😁

⏰ REGISTRATION CLOSES TODAY.

Registration closes at 5pm BST (12 noon ET) today (Monday 4th September)

Join RARE Youth Revolution and the Action for XP team on 9th September in Raleigh, North Carolina for a rare disease youth event, by young people, for young people and families.

This is a cross-condition conference and a chance to learn and share about collective experiences of living with a rare disease.

REGISTER for in-person below 👇👇👇

https://therarefair.com/registration-options/

And don't worry if you cant make it in person you can also attend virtually via the same link. Register now to secure your place and we hope to see you there.

Latest update on the clinical trial being conducted by CLINUVEL PHARMACEUTICALS LTD

https://m.youtube.com/watch?fbclid=IwAR2CVL1LQ30Yymf-IHtBEZjBTPtRxxBzwEEXo28qtVhvsLiN-8aXKZKJoTA_aem_AWVx5QINwQmt5g2FwJwWHtqJ_hU1kbE4_6vwaibmtS-eJ2chlHgeSIJiFJLfd4mt8ZI&v=jMT68hN9MH0&feature=youtu.be

CUV151 DNA Repair Study Update

Our team are involved in the planning of this event in the US through our work with Rare Revolution Magazine and RARE Youth Revolution. This is a very special event for children, and families to young people affected by rare conditions to connect, learn and have fun together. We will be there in person and would love to see some of our XP young people and families come along and join the fun. It is an awesome agenda!

DETAILS BELOW for registration:
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The Rare Fair is a hybrid event for the international rare disease community, seeking to connect rare disease patients, families, and other stakeholders across the globe.

Join the RARE Youth Revolution at Research Triangle Park, North Carolina on the 9th September 2023 for the Youth Festival, a day dedicated to young adults affected by rare disease.

They have limited availability, so book now to secure your place! Find out more about how to register at

https://therarefair.com/registration/

You can view the full agenda here: https://therarefair.com/gallery/

Broad spectrum protection, 25% off 👉 Altruist Dermatologist Sunscreen is designed by skin cancer specialist Dr. Andrew Birnie. Affordable Sunscreen 5 star UVA protection. Donate per product sold to children with albinism in Africa.