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1st April 2021

Welcome to the April Newsletter from the Pompe Support Network.
There is such a lot happening for Pompe at the moment, from new drug developments including
 Novel Oral Therapy for Pompe disease by MAZE Therapeutics, to proposed changes to regulatory procedures at NICE, and other events that heavily influence the work of the Pompe Support Network. We will always report significant events on our website at www.pompe.uk, but for this newsletter, we are concentrating on events and projects directly affecting people within the national and global Pompe community. 
Topics discussed in this newsletter are: 


Contents: 
 

International Pompe Day (IPD)
Thursday 15th April 2021

IPD is a day to bring the global Pompe community together in a great show of strength. It is an opportunity to see how other people are living with Pompe and understand some of their challenges. It is also a day to raise awareness of this incredibly rare condition. 

We would encourage you to submit a paragraph or two about yourself, together with a photograph to illustrate your location in the world. That might be a local landmark, somewhere of special significance to you, or simply your back garden. 

Full instructions on how to participate in this global event are given on the IPA Website, but we have copied them below for convenience.
 



The IPA believes that raising awareness of Pompe Disease is key, and this year’s theme has been selected as “Pompe Around the World”
 

How YOU can Participate: 

  1. Our goal with Pompe Around the World is to show what it is like to live, cope, or how you are connected with Pompe all over the world — that no matter where we live, we are all connected. Please take a picture that represents where you live and share a short statement about your life. 

  1. Send an email to ipd2021@worldpompe.org 

  • The subject of your email will become the title of your post

  • The body of the email will be the post itself, where you can share your short statement

  • To include your photo in your post, you can simply attach the image to your email (size max. 10 MB). 

  • Please include your name, country and age in the email, so we can show the world how strong our Community is.

International Pompe Day
ZiP 007: IPD Zoom into Pompe meeting
 


Date: Thursday April 15th, 2021
Time: 10:30am to 12:30pm (London, UK) 
Place: Online Zoom Meeting



To join, please register in advance for this meeting: 
https://us02web.zoom.us/meeting/register/tZAqceCorzkuE91N_ef0Tx8SX04qmldW0kKb 

After registering, you will receive a confirmation email containing information about joining the meeting. 


The meeting will very informal, but should help us to plan the year ahead, ensuring that we have the right priorities to support you and the Pompe community. So, the Agenda is open to all individuals joining the call, but you might be interested to raise topics such as: 

  • Pompe Support Network – what support do people need? How can I help? 

  • Podcasts, film, videos  

  • Meet trustees, staff and volunteers 

  • Complement or compete with other patient support groups? 

  • What is the International Pompe Association? 

  •  Allan Muir is Vice-chair of the IPA, so can discuss some of their work 

  • What happens on International Pompe Day? 

  • New Pompe disease drug submissions for Market approval in 2021 

  • New technologies – Gene Therapy – What do you need to know? 

  • Patient representation at NICE Technology Appraisals (TAs)  

  • Mental Wellbeing 

  • Physical health 

  • How many more surveys? 

  • Future “Zoom into Pompe” Meetings

ZiP 007 : Zoom into Pompe

Pompe Voices

Our first podcast in this fascinating series of insights into people’s lives was recorded by Wayne Belfitt and his close friend Farrah. Their conversation has now been heard by over 1 billion listeners*. A second Pompe Voices podcast recorded by Barbara and Allan Muir concentrates on the early years of seeking a diagnosis for their 2 year-old son.  
 

We have more recordings planned and hope to add to the playlist frequently; so, look out for our latest tracks on the website. Our hope is that Pompe Voices will be of interest to the whole community, but especially people new to Pompe, either through a recent diagnosis or a professional interest. Whatever your reason for listening to them, please feedback your thoughts and feelings, either on the published track or directly to the Pompe Support Network (hello@pompe.uk). 

 

Would you like to become a Pompe Voice? 

We would love you to allow us to record a conversation between yourself and another person in your life. The conversation can be about any aspect of life, but should try to show how your relationships have been influenced, either positively or negatively, by Pompe. Our normal procedure is to supply new, professional microphones, and we set up a Zoom call to record the conversation. You can chat for as long as you like, we’ll edit it down to around 15 or 20 minutes. We can also provide a volunteer to record a conversation with you, if you prefer not to involve people close to you. You’ll hear the recording and be asked for your permission before it’s published online.




* Check publication date

Pompe Voices

Video Library

Our YouTube Video channel continues to grow, and now contains six recordings of our Zoom into Pompe (ZiP) meetings and other videos of interest. One more ZiP meeting discussing Gene Therapy by Dr Pim Pijnappel is available to our subscribers on request. 

The latest video to be added was a conversation between Raymond Saich, President of the Australian Pompe Association (APA) and Allan Muir, Chair of Pompe Support Network. They talk about the World Symposium, a five-day conference usually held in San Diego, California or Orlando, Florida. Allan is keen to encourage other Pompe patient group representatives to join the meeting; you can listen to the interview to understand why. 

We are currently planning a number of new video projects, if you have any skills in video or film production, we’d love to hear from you to discuss how you might be involved. 
 

Video Library

UK LSD Patient Experience Survey 2020


We had a great response from Pompe individuals and families to complete this survey last year. It sought the experiences of people using the specialist LSD centres in the UK as well as their experiences of homecare for ERT, their mental wellbeing, and experiences of the ongoing pandemic.  


We have published the results from the Pompe community in a report published on our website - please click below to see the results: 

Survey Results

Mental Wellbeing Support 


From the UK LSD Survey above, we learned that many people are struggling with mental health issues, exacerbated by the pandemic, and may require additional support. We would now like to explore the best way of providing such support. For that reason, we've created a 4-question survey requiring only Yes or No answers that will take only a minute to complete. If you haven’t already responded, please click HERE to go to our survey.


Once we’ve collected a sizeable response to the survey, we should understand the preferred ways of providing a mental wellbeing support service to the Pompe community.






 

Mental wellbeing survey

Life of Pompe - survey results
A Survey by Pompe Support Network


We recently invited members of our community to answer a few questions about their lives with Pompe Disease.

The survey offered many very interesting responses which we have now issued the results on to our website which you can see HERE



Thank you to everyone who took part in the survey, we are using these results to ensure our future reports and articles feature the issues and information which matter to each of our members.

Life of Pompe - Survey results
Special Thanks to Farrah and Lewis
 
The Pompe Support Network is, like most small charities, dependant on generous donations from the public and charitable grants from organisations. 
 
This month we would like to say a special Thank You to Farrah Hirst and her 10-year old son, Lewis, who walked over a mile each day of March to raise money for Pompe Support Network.
They were inspired to complete the feat fo their friend, Wayne Belfitt, a Pompe patie
nt, and raised an excellent sum of £325.00 for their efforts! 
Thank you both so much! 

(You can hear Farrah in conversation with Wayne on Episode 1 of Pompe Voices)

 
If you would like to raise money for Pompe Support Network or would like to simply donate then please click HERE

Thank you!
 
Did you know that just by online shopping you can raise funds for the Pompe Support Network - for FREE?
 
By shopping via Give as you Live Online, or AmazonSmile or eBay, you can raise money
for Pompe Support Network. It's free and easy - Simply click on the store you want to shop and then continue to shop as normal. Just that extra click will automatically generate free funds from your purchase for our charity. It’s so simple but can make a great difference to us.

So, for your next online food shop, or clothes purchase or staycation booking, please consider using these site to raise money for Pompe Support Network - all for Free!

You can also make a direct donation through Paypal 
 
Donate

That’s all for this newsletter, but please don’t forget to keep in touch with us, and maybe we’ll see you on the Zoom call on International Pompe Day. 
 

Allan 
Chair of Trustees 

 

Alex 
Communications Officer

 

Thank you for reading the Pompe Support Network Newsletter,
if you have concerns, stories, or you spot articles of interest, please let us know and we will try to include them in future editions.
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