We are creating a Children’s Book to support children affected by Adrenoleukodystrophy (ALD) and their siblings. The primary goal is to support children, to build emotional resilience and openness to talk and ask questions following the diagnosis of a rare disease.
Our research shows how both an affected child and their sibling’s life can change following diagnosis. For the sibling of the affected child they can easily become a ‘shadow’. Often the needs of the affected child, e.g. hospital appointments, take priority over the siblings. Family dynamics will change, children will see their parents upset, they will hear a lot of confusing words they do not understand. There are no child focused resources available for the siblings of affected children.
A resource to be utilised by families following a diagnosis of ALD, where sometimes more than one child is diagnosed. Described from the perspective of a child whose sibling has been diagnosed with ALD it will show the experience of the situation, one that is relatable and understandable for children. Alongside practical information, we’ll include the emotional support with key messaging being of hope, playfulness, joy and how a sibling’s relationship can play a supportive role.
- To produce a support book that will support affected children, their siblings, and their family
- To produce a child friendly source of information about ALD.
- A tool that can be utilised by parents when discussing a diagnosis of ALD within their family.
- A resource that health care professionals can recommend to families at the point of diagnosis.
A supportive tool for affected children, siblings, and their families. Diagnosis of ALD is a scary experience, especially being diagnosed with a rare condition. It will help make an ALD diagnosis relatable whilst providing child friendly advice with mechanisms to cope . It will be a tool parents can utilise in family discussions, a story they can explore and discuss together. It will act as a resource that both Alex TLC and other medical professionals can recommend to families to utilise.
We asked children in the charity which family they would like to be the family featured in the book and they made their decision. Meet our family…
GET ADRENOLEUKODYSTROPHY (ALD) ADDED TO THE UK’s NEWBORN SCREENING PROGRAMME
A new website has been launched as part of our #ScreenOurBoys Campaign. Please visit the website to learn about the issues and why it is so important for ALD to be added to the Newborn Screening Programme. With everyones help we can make this a reality.
Please help us to share this and use the hashtag #ScreenOurBoys in your social messaging. We would be grateful if you can promote both the petition and the website to your own audiences, friends, family and professional organisations you feel are relevant to our cause.
Leukodystrophy affects ALL ethnicities and in reaction to this we are addressing the clear need for our organisation to target and help these minority groups.
We are becoming very vocal about attracting an increased engagement with hard to reach families in conversations, literature, website, and comms.
With this in mind we are focusing on the providing the following:
- Translating our website into additional languages and showing our current minority group beneficiaries in our imagery .
Digital Community Weekend:
- Ask existing minority group beneficiaries if there are any considerations we should make for this year’s event.
- Include ethnicity on registration form
- Creating minority group engagement session/focus group
Comms & Conversations:
- Increasing minority group engagement – we are currently speaking to families already known to us.
- Gauge any existing barriers by talking directly with our current minority group beneficiaries.
- Create further dialogue to increase effectiveness in engaging the minority communities.
- Introduce further minority group focussed ‘In Conversation with…” episodes. See below:
Newborn screening is a process whereby newborn babies are tested for a selected group of rare diseases to help prevent symptoms and allow for early treatment.
In 2017 ALD Life submitted an application to the National Screening Committee (NSC) to add adrenoleukodystrophy Adrenoleukodystrophy to the panel of conditions screened for in the UK. Unfortunately it was initially rejected, but with the assurance that it would be added to the list of conditions for review and reassessed in 2019/20. We are working hard alongside experts to ensure we can submit the new evidence required to influence a change in this decision.
Interesting paper exploring the experiences of how a diagnosis of ALD is communicated to parents through the Californian newborn screening programme
To find out more about progress in newborn screening both in the UK and worldwide see our news section.
Adrenoleukodystrophy Newborn Screening in the Netherlands (SCAN Study): The X-Factor
Dutch scientists develop algorithm to overcome the logistical problems of initiating boys-only new born screening for ALD. This is a ground breaking development and will be a first for gender specific new born screening. This is an important step forward in adding ALD to the new born screening programme in the Netherlands and also excellent news for other countries, like the UK, in their own battles.
Read the article here : https://www.frontiersin.org/articles/10.3389/fcell.2020.00499/full
The 10th European Conference on Rare Diseases & Orphan Products (ECRD)
Our CEO Sara presented an online talk in the session that compared the differing national approaches of exploring the limits and potential of current and future approaches to newborn screening. The session explored technical, societal, ethical and scientific considerations.
Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) are important potential underlying diseases to consider in boys and men with primary idiopathic (unexplained) adrenal insufficiency (Addison’s Disease).
The majority of boys with adrenal insufficiency are routinely tested to see if ALD is the cause. However, this does not always happen, particularly for adult males.
We are working with specialists and the Addison’s Disease Self Help Group (ADSHG) to ensure testing for ALD in all males with adrenal insufficiency becomes routine practice in the UK.
To find out more about progress on this project see our news section.
The Addison’s Disease Self Help Group (ADSHG) has medically verified information to help you live with this condition, including downloadable information for your GP, hospital emergency department, school or work place.
Project Bostock is a memorial to our former Chair and dear friend, Mark Bostock, who sadly lost his life to cerebral ALD on 30th March 2017.
The aim of Project Bostock is to look specifically at the issues faced by males with adrenomyeloneuropathy (AMN).
In collaboration with Raremark, an online service for people living with rare diseases, we surveyed males living with AMN in 2018 to learn more about the impact of symptoms, services used, and future concerns.
This information will be used to influence future treatment policies, particularly around adult transplants.
To find out more about progress on Project Bostock :