Breaking Down Barriers

 

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 BAME families in conversations, literature, website, and comms.

The acronym BAME stands for Black, Asian and Minority Ethnic and is defined as all ethnic groups except White ethnic groups. It does not relate to country origin or affiliation.

With this in mind we are focusing on the providing the following:

Website:

  • Translating our website into additional languages and showing our current BAME beneficiaries in our imagery .

Digital Community Weekend:

  • Ask existing BAME beneficiaries if there are any considerations we should make for this year’s event.
  • Include ethnicity on registration form
  • Creating BAME engagement session/focus group

Comms & Conversations:

  • Increasing BAME engagement – we are currently speaking to BAME families already known to us.
  • Gauge any existing barriers by talking directly with our current BAME beneficiaries.
  • Create further dialogue to increase effectiveness in engaging the BAME affected community.
  • Introduce further BAME focussed ‘In Conversation with…” episodes. See below:
Alex - The Leukodystrophy Charity

Newborn Screening for Adrenoleukodystrophy

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.

The National Screening Committee (NSC) is responsible for making decisions around which conditions are added to the UK newborn screening programme.

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.

Alex - The Leukodystrophy Charity

Raising awareness of the link between Addison’s Disease & Adrenoleukodystrophy (ALD)

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.

Alex - The Leukodystrophy Charity

Project Bostock

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 :

Read out 2019 Survey report with Raremark 

Alex - The Leukodystrophy Charity