Welcome to the Events page!
15th April 2024 : World Pompe Day
On this day, each year, Pompe Disease groups make an exerted effort to spread awareness about the disease. The International Pompe Association (IPA) invited contributions and Charlie’s Garden accepted their offer.
And our logo is featured with many others!
We also participated in their video “Every Move Counts”
This video demonstrates helpful exercises for mind, body and soul, so please watch it to the end as there is important information.
The Pompe People have a motto:
Wednesday 21st February 2024 – Exciting New Project for the World’s Pompe Community
Charlie’s Garden is very excited to be part of this ground-breaking initiative for the Pompe Community.
A recording of the first @Pompe.Community open meeting is available now on YouTube.
If you weren’t able to make the meeting live (or even if you were), check it out and subscribe to the channel!
www.youtube.com/@Pompe.Community. Stay up to date: https://pompe.community
Get involved: https://pompeconsortium.org.
- FB/IG/YT/Linkedin: @pompe.community
- X: @pompecommunity
We invite you to watch the video and reach out to us for any questions, we are always open.
31st January 2024 – Royal Honour For Pompe Warrior
Charlie’s Garden is delighted to share this great news about our dear friend and the amazing Pompe Warrior, Maryze Schoneveld van der Linde, International Pompe Association (https://worldpompe.org/) Communication Coordinator who was awarded a very special medal in her hometown in the Netherlands.
Here is what she wrote to us about the well-deserved award:
“On 20th January 2024, I was honoured with a Royal Decoration ‘Knight in the Order of Oranje Nassau’. Oranje Nassau is the family name of my King and his family. I received it
– for raising worldwide awareness on Pompe Disease and other rare diseases,
– for my significant contribution to the Pompe Community in getting approved treatment for broad label use,
– supporting individual patients to get access to treatment,
– organising ventilators for patients in need ofventilation,
– helping to get wheelchairs etc.”
Maryze added: “Many people who came (Genzyme, Erasmus MC Rotterdam team, infusion nurses, respiratory care nurse, GP, friends, family, neighbours) told me later they had no clue that I had done so much for so many years.
“Fact is that everything I did always has been a joint effort and teamwork with others. Nothing ever can be done alone. Its always teamwork. Its exactly this teamwork and joint effort what I loved and enjoyed the most in making a difference to others.
“The wonderful, dear, warm people involved in rare disease communities I met over the many years enrich my life. Without them my life would have been totally different.
“I felt honoured and humble that so many involved people came to attend the Decoration given by the major. Over 11 letters were written to support the application to decorate me.
“I am still processing it. My brain is still trying to understand.”
– Maryze
“Participants in The Pompe Consortium will be able to access greater amounts of data, reduce the cost of collecting and maintaining it, and reduce the burden on patients who want to share their health information to advance the development of new therapies.” – Charlene Son Rigby, CEO of Global Genes
6th December 2023 – Pompe Consortium and Data Initiative
Charlie’s Garden is proud to be part of a forward thinking collaboration in this groundbreaking news for Pompe Patients.
“Patient engagement is a cornerstone in the rare disease world.”
“We think the experience with Pompe offers an opportunity (and responsibility) to create a path for other diseases and build out a scalable model to show what pooling patient owned data looks like – and what it can do!
“Additionally, we can show how modernised roles and relationships between different players can create new experiences that support the ecosystem health and will accelerate discoveries,” said Ryan Colburn, a Pompe disease advocate and an organiser of The Pompe Consortium.
The Pompe Consortium includes the participation of biopharmaceutical companies and patient advocacy organisations, as well as academic researchers.
They include Sanofi, Astellas, Charlie’s Garden, Grants Giants, New Zealand Pompe Network, Pompe Alliance, Pompe Warrior Foundation, Marshall’s Mountain, Rykers Foundation, Pompe AWay, and additional Pompe advocates and investigators.
Lucy outside the courthouse
One of the vials for Pompe Disease treatment available in France in 2006
30th October 2017, Charlie’s first Nivolumab immunotherapy infusion
28th September 2023 and 2nd October 2023 – Court case in Vienna, Austria
It is ironic that exactly six years ago Charlie went through the most traumatic transition of his life and now we were being questioned by the judge in Vienna about his degree of pain.
Lessons learned and to be shared:
Going to court is a lengthy process and you will be having to confront during all the preparation time the difficult things you personally had to deal with. You should only go to court if you can cope with having constantly to re-live what was a very distressing time.
However, Lucy feels that she should share her experiences, even though she lost the battle, so dear to her heart, and believes there could and should be benefits for others by doing so.
No spoilers – we lost the case which Lucy brought against the City of Vienna, Austria, with Charlie’s consent, as the city owns the hospital where Charlie knew he had been a victim of medical negligence.
- Civil courts are only able to make good wrongdoings by a settlement of money. So going to court does not mean that the same thing will not happen to someone else, it is not the way that a court works.
- If you are litigating someone be prepared for a BIG defence.
- Resist going to court where you do not have a good command of the language.
- Your biggest challenge is to change the preconceived ideas of what the opposition has presented. It took years to bring her case to court, but Lucy believes that a decision had been made prior to the hearing.
- Understand the law of the land, which is not necessarily about getting to the truth of what you are pursuing; the Civil Code is different in each country.
- Don’t expect anyone other than yourself to know all the facts, and do have them at your fingertips.
- Read and prepare counter arguments to all the opposition’s appendices, which can sometimes be in their hundreds.
- It may be the first time for you in court but for most of the others it is a home away from home.
- Go to a hearing in the same place where yours is to be heard and judged, so that you can see how the process works. Self-preparation is vital.
- Explain Pompe disease, again, in detail, if given a chance, or any other RELEVANT contexts that have an impact upon your decision to go to court. Do not presume that everyone in the court room has read all the surrounding ‘evidence’.
- Remain calm and dignified to gain respect.
On the brighter side of sharing Charlie’s life and death
He was the first Pompe patient to receive the fortnightly home infusions in Vienna, Austria, thus paving the way for others.
The case will be officially closed on Monday 18th December 2023. On Monday 18th December 2017 Charlie had a CT scan showing that immunotherapy was working, there was no evidence of tumour growth and he had what is called in oncological terms, disease control.
His oncologist reported to us on reading these results that he was delighted that immunotherapy had been a success and had worked as “we” wanted. Charlie had initially been refused immunotherapy on 14th August, he was told by this same doctor that it was to be kept for the “end stage”.
The family joined with Charlie to increase pressure upon the hospital, and finally he had his first Nivolumab immunotherapy treatment on the 30th October 2017, after 7 weeks without any cancer treatment at all.
It was too little, too late for Charlie, although we hope that this information may help others.
PhD students Alessandro Iuliano and Stijn in ‘t Groen; Special Professor Dr Pim Pijnappel
27th November 2023 – Special Professor Dr Pim Pijnappel
Remember last year our Events Page post titled: Where your donations are going after supporting Sarah’s cross-channel swim?
Sarah Pitt undertook to swim across the Channel with the Salty Sea Snails, raising a massive amount of money that Charlie’s Garden donated to a groundbreaking research project that will:
– Help patients with their individual needs
– Help young researchers improve the quality of life of people with Pompe’s disease
– Support helping many others who have muscle deterioration problems
This donation was given to a muscle chip research project conducted by two young researchers and PhD students, Alessandro Iuliano and Stijn in ‘t Groen, and led by Dr Pim Pijnappel of the Erasmus Medical Center Rotterdam.
And now we are delighted to share that this month, November 2023, Associate Professor Dr Pim Pijnappel has been appointed (drum roll please) special professor ‘Cell- and gene therapy’ at the Erasmus MC. Congratualtions!
16th November 2023 – Charlie’s Posthumous Birthday Present, a personal donation to the Red Squirrel Survival Trust
Charlie’s Garden and The Charles Christopher Michael Foundation are delighted that this year Charlie’s posthumous birthday present is a donation to the Red Squirrel Survival Trust (RSST).
Charlie’s Garden’s mascot is pretty chuffed that we have chosen this and we know Charlie will also love it as the RSST are doing all that Charlie believed in.
“The Red Squirrel Survival Trust is a national charitable trust which aims to establish red colonies across the UK; protect reds in areas where numbers have stabilised; fund research that helps to secure the red squirrel’s long term future; secure the environment in which red squirrels thrive, by protecting the biodiversity of Britain’s native woodlands.
“Our commitment to the future: Our native red squirrel populations are secure and have expanded beyond their current strongholds.
“Our woodlands are flourishing and can continue to deliver multiple benefits for future generations. A long-term commitment to practical action and scientific research, developing and trialling innovative control methods, research and monitoring, developing a series of case studies highlighting exemplary management, coordination and communication and so bringing groups together to ensure they work effectively and to a common purpose.”
Photos courtesy of the Red Squirrel Survival Trust
Charlie has been united with his tree, a 140-year-old oak, in Charlie’s Garden, which is located in the Klosterwald in the hills above Vienna, Austria.
In front of the tree, there is this beautiful stone with a QR code on it that will take you to a page about Charlie’s Garden on the Klosterwald website.
Sarah Pitt undertook to swim across the Channel with the Salty Sea Snails (see post below).
From left to right: PhD students Alessandro Iuliano and Stijn in ‘t Groen; Associate Professor Dr Pim Pijnappel
The letter that the Prinses Beatrix Spierfonds sent Charlie’s Garden
Where your donations are going after supporting Sarah’s cross-channel swim
Thank you very much for supporting and donating to Sarah’s cross-channel swim with the Salty Sea Snails in August!
Charlie’s Garden has chosen to make a donation to a muscle chip research project conducted by two young researchers and PhD students, Alessandro Iuliano and Stijn in ‘t Groen, and led by Dr Pim Pijnappel of the Erasmus Medical Center Rotterdam.
Explaining the research, Dr Pijnappel said: “By combining different areas of expertise, we make unique research possible. We are going to develop a system with which we can measure not only the muscle strength of the entire 3D muscle, but also of the individual muscle fibers. This enables us to determine even better what goes wrong in the muscles of people with a muscle disease. And what is the effect of a drug on this. As far as we know, no one in the world is doing this.”
Dr Pijnappel added: “In this research, skin cells derived from patients are converted in the laboratory to stem cells, which are then converted into patient-derived muscle cells. These muscle cells are grown into miniature muscles between two flexible pillars (similar to tendons).
“Upon stimulation, the miniature muscles contract, and the force of contraction can be measured. In this way, the most important function of human muscles, which is contraction, can be assessed in the laboratory.
“The effects of disease on the muscles are studied, and the effects of therapies are assessed for individual patients. This new technology is expected to accelerate the development of novel treatment options for muscle diseases. Our laboratory has a special focus on Pompe disease.
“The collaboration project is co-funded by the PPP Allowance made available by Health-Holland, Top Sector Life Sciences & Health, to the Prinses Beatrix Spierfonds to stimulate public-private partnerships, and by Charlie’s Garden.”
Dr Ellen Sterrenburg, General Manager of the Prinses Beatrix Spierfonds, which is a Dutch foundation whose patroness is Queen Beatrix of the Netherlands and which raises money to fight muscle diseases and to support the people who suffer from them, wrote a letter to Charlie’s Garden to thank us for our donation.
Charlie’s Garden is delighted to be able to help support this cause as the groundbreaking research project will:
- help patients with their individual needs,
- help young researchers improve the quality of life of people with Pompe’s disease
- and support helping many others who have muscle deterioration problems.
The Salty Sea Snails: Sarah, Lesley, Tan, Sian, Sharon & Sue (aged 43 to 67 years young)
Sarah’s Cross-Channel Swim
An amazing £1,595.74 has been raised via JustGiving (who take a percentage from the total of £1,655) by Sarah Pitt for Charlie’s Garden, increasing awareness about Pompe Disease and our projects. With the exchange rate on the day of transferring the funds to Charlie’s Garden’s account, that magically became €1,824!
It all started in March 2022 when Sarah was invited to join a team to do a Relay Swim across the Channel. She had previously swum with these women at other charity events. They are known as The Salty Sea Snails.
Their Captain, Lesley Duncan came up with the name “Sea Snails” and the rest of the girls added Salty. Sea Snails, common name: Scotch Bonnet.
Design: Karen Marshall, “Wild swimmer, open-water lover, cold water dipper, outdoor, sea, river… whatever it is you do, just love it!”– Karen Marshall
Sarah, 67 years old, is passionate about swimming and swims regularly in cold water. She had always swum on holidays, although it was in December 2016 that her passion clicked in and she began swimming in organised events, mostly charity swims. Around St Michael’s Mount in Cornwall. Burgh Island for prostate cancer research at Derriford Hospital. The Bantham Swoosh for a charity to get children swimming called Level Water. To name two.
The team had custom-made costumes by budgy smuggler, T-shirts, costumes and hoodies designed by Karen Marshall who sells through Fog Bear.
Sarah in her Salty Sea Snails hoodie
Sarah in her Salty Sea Snails hoodie, powered by Fidelity Energy
On 12th June, Sarah went for a five-day training camp to learn more about cross-channel swimming and swimming at night
On Tuesday, 28th June, Sarah told her story, explained her motivation and launched her JustGiving page via Facebook. You can read it all here and the wonderful support messages she received.
By Friday, 1st July, Sarah reached her initial target of £500 within 4 days! Her IT support team reacted with warm enthusiasm. The target was raised to £1000. That was quickly achieved by Sarah’s friends and loyal supporters to Charlie’s Garden. The target was once again raised to a massive £1,500 and on the closing date of the JustGiving campaign, on 3rd September, the total amount was an amazing £1,655!
On 22nd August, at 4.30 am, The Salty Sea Snails met with Paul Foreman and The Optimist. The relay is observed by an official. Each swimmer must swim one hour each. The challenge is not only physical but mental and there are many side effects, for instance “salty tongue” which causes blisters. Post-swim mouthwashes are therefore a must.
The Optimist
Boarding The Optimist at 5 am, on 22nd August 2022
Not the only ones crossing the channel!
Sarah reported to Charlie’s Garden regularly via Lucy and updated us on her swims. Her update on Just Giving on 22nd August: “Empowered by the generous donations to Charlie’s Garden.”
Just before setting off to the beach to start the swim
Sarah explains her start
From 5am to 3:05pm, look how far they went!
At 3:05pm, the Swim was aborted as one of the team was unwell.
Did you know that only 50% of channel swims achieve their goal, and look how far they got!
Sarah on her second swim of the day (photo by Lesley Duncan)
Nevertheless they swam, they dug deep and Sarah, Charlie’s Garden’s very own mermaid, did swim a very long way across the channel!
After returning home and having had time to absorb the whole experience, on the 26th August, Sarah said:
“After our fab start from Dover with magic conditions we saw seals, porpoises, tankers and cruise ships! It got rough as expected but we were all confident as this was often the case in our regular swims.
“We didn’t make it all the way across, very near, but… On reflection, the bright side is that the experience of swimming in shipping lanes, sighting huge vessels, fighting the constant sea sickness with my friends is something I’ll never forget!
“I’d really like to thank every one of you for your donations to Charlie’s Garden.
“Charlie’s parents, Andrew and Lucy have been blown away by the love as have I. The consoling subsequent messages have really touched me.
“My return to the sea has been slow and dispirited, saved by my swim family who have given me so many.
“Don’t worry – I will go again! When? – maybe next year. I’ve learnt a lot to take me forward!”
Sarah has made an enormous impact on raising awareness for Pompe Disease and Charlie’s Garden.
Her determination, stoicism, kindness, thoughtfulness, caring attitude is remarkable and Charlie’s Garden is so lucky that we have Sarah, her support team, and (her and our) very kind and considerate supporters.
Thank you from Charlie’s Garden to you all, to our very own amazing mermaid, her support team and her fellow swimmers for sharing this life experience and making memories that we can all share.
Sarah plunges into the Channel Relay Swim on 22nd August 2022 (photo by Lesley Duncan)
Sunday, 3rd July 2022 – Diary of Adam / Diary of Eve, adapted from Mark Twain’s Extracts from Adam’s Diary
The 55th month since Charlie’s passing
Jérôme was invited to perform in Lucy’s garden in France
Dimanche, le 3 juillet 2022 – Journal d’Adam / Journal D’Ève, adapté des Extraits du journal d’Adam, par Mark Twain
Le 55e mois depuis la disparition de Charlie
Jérôme a été invité à se produire dans le jardin de Lucy en France
Jérôme Delage, co-founder with Caroline of the Cie 24.92 theatre group, led us through all the human emotions with his sensitive interpretation and his extraordinary talents
Jérôme Delage, co-fondateur avec Caroline de la compagnie théâtrale Cie 24.92 nous a fait passer par toutes les émotions humaines avec son interprétation sensible et ses talents extraordinaires
Jérôme accompanied his performance with original songs and music composed for the performance on the ukulele
Charlie played the ukulele and grew up with The Adventures of Tom Sawyer, so Lucy was delighted to have Cie 24.92 back for a second time
Jérôme a accompagné son spectacle de chansons originales et de musique composées pour le spectacle à l’ukulélé
Charlie jouait du ukulélé et a grandi avec Les Aventures de Tom Sawyer, c’est pourquoi Lucy était ravie de retrouver la Cie 24.92 pour la deuxième fois
After the performance, we all enjoyed a glass of sangria and delicious nibbles, which were very kindly provided by The Corner Shop in Thiviers
Après la représentation, nous avons tous apprécié un verre de sangria et de délicieux amuse-bouches offerts par The Corner Shop, à Thiviers.
It is with deep gratitude that Charlie’s Garden thanks Charlie’s and Lucy’s friends for their friendship and support. Thank you!
C’est avec une profonde gratitude que Charlie’s Garden remercie les amis de Charlie et de Lucy pour leur amitié et leur soutien. Merci !
Pompe’s Disease – Self Care And Mental Health
La Maladie de Pompe – Soins Personnels et Santé Mentale
“Self Care and Mental Health” and the series of PowerPoint slides “The Five Stages of Grief that comes with a New Medical Diagnosis” were kindly shared by our friends and partners Pompe Alliance. This video presentation was recorded in March 2022 by Angel Chapin MSW (Master of Social Work), LICSW (Licensed Independent Clinical Social Worker).
« Soins personnels et santé mentale » et la série de diapositives PowerPoint « Les cinq étapes du deuil qui accompagnent un nouveau diagnostic médical » ont été gentiment partagées par nos amis et partenaires Pompe Alliance. Cette présentation vidéo a été enregistrée en mars 2022 par Angel Chapin MSW (maîtrise en travail social), LICSW (travailleur social clinicien indépendant agréé).
Vidéo de la présentation éditée et texte des diapositives PowerPoint “Les cinq étapes du deuil qui accompagnent un nouveau diagnostic médical” traduit en français par Charlie’s Garden.
Les cinq étapes du deuil qui accompagnent un nouveau diagnostic médical
Le Deuil
· Le deuil est une expérience qui peut vous anéantir mentalement, physiquement et émotionnellement, et qui ne se limite pas à une perte traditionnelle
· En fait, le passage par les étapes du deuil peut survenir à la suite de tout changement majeur dans la vie
· Faire le deuil de sa santé après un nouveau diagnostic médical peut être un défi inattendu
· Le type de deuil qui accompagne une maladie chronique est complexe, et le cycle peut souvent recommencer à chaque fois qu’un nouveau problème se présente
Les étapes du deuil
Le Déni
· Se dire que cela ne se passe pas vraiment, que c’est dans la tête ou que ce n’est pas si grave
· Minimiser la gravité de sa maladie
· Rejeter la douleur
· Ignorer ou cacher les symptômes à ses proches
· Passer outre le problème de santé comme si tout allait bien
· Douter de soi et de la validité de ses inquiétudes
· Vous pouvez ressentir de la peur, un choc, de la confusion et de l’évitement
La Colère
· Vous pouvez ressentir de la colère envers vous-même, envers vos médecins, envers le monde entier
· Il est parfois plus facile de s’en prendre aux autres quand on a du chagrin pour soi-même
· Vous pouvez vous replier sur vous-même, surtout si vous avez déjà fait l’expérience du déni
· Vous pouvez vous demander pourquoi vous avez attendu si longtemps avant de consulter un médecin.
· Vous pouvez ressentir de la frustration, de l’irritation et de l’anxiété
La Dépression
· La dépression est un état mental caractérisé par une baisse de l’humeur et une aversion pour l’activité. Classée médicalement comme un trouble mental et comportemental, l’expérience de la dépression affecte les pensées, le comportement, la motivation, les sentiments et le sentiment de bien-être d’une personne.
· Il peut être difficile de défendre ses intérêts lorsqu’on se sent déprimé.
· Vous pouvez avoir l’impression qu’il est inutile de continuer à chercher un diagnostic ou un traitement.
· Vous pouvez vous sentir accablé, impuissant et hostile
La Négociation
· À ce stade, vous vous efforcez peut-être de trouver un sens à votre vie
· Vous pouvez vous tourner vers les autres
· Raconter votre histoire
· Vous vous demandez peut-être ce qui se serait passé si vous aviez vu un spécialiste plus tôt ?
· Et si j’avais vu le mauvais médecin ?
· Même si vous ne pouvez pas réellement changer le passé (ou prédire l’avenir), négocier avec votre santé peut être un moyen de traiter cette nouvelle réalité.
L’Acceptation
· La dernière étape du deuil est généralement l’acceptation
· L’exploration des options et le passage à autre chose avec un nouveau plan en place
· L’acceptation du fait que votre relation avec votre corps est peut-être différente maintenant.
· L’acceptation de votre vie avec une maladie rare
· L’acceptation ne signifie pas que vous devez être heureux ou satisfait de tout ce qui arrive à votre corps et à votre santé
· Il est important de noter que nous pouvons vivre ces étapes du deuil à tout moment, et que vous ne les vivrez peut-être pas dans un ordre particulier, et qu’il n’y a pas non plus de durée déterminée pour les traverser. Sachez simplement que c’est un processus sain que beaucoup d’entre nous ont vécu.
PowerPoint:
10th April 2022 – Charlie’s Garden Enjoyed Sharing Seeds, Thoughts and Love
The Charlie’s Garden Foundation continues to grow thanks to you!
The search for the Memorial Garden is still on!
Charlie’s Garden’s stand at the car boot sale
Charlie’s Garden shared seeds, love and joy!
The Thiviers car boot sale was organised to support the local nursery school (Ecole Maternelle de Thiviers) and this photo shows one of Charlie’s first experiences of school where he learned some cooking in 1993!
Out of little acorns grow big oak trees!
We announced on 21st March 2022 that Charlie’s Garden would be taking part in the Thiviers annual car boot sale:
And on 28th March, we followed up with:
Nous avons même gagné un peu d’argent, merci ! Nous savons que les temps sont durs et que nous avons tous des priorités, si jamais vous pensez avoir quelques euros à dépenser, nous sommes toujours reconnaissants pour un soutien financier. Aucune contribution n’est jamais trop petite. Des petits glands naissent les grands chênes !
We even made a bit of money, thank you! We know that times are hard and that we all have priorities, if ever you feel that you have a few euros to spare we are always grateful for financial support. No donation is ever too small. Out of little acorns grow big oak trees !
Maintenant le 10 Avril, nous sommes ravis de dire que vous avez été nombreux à visiter nos pages ! Nous vous encourageons à continuer à faire passer le message. C’est de la bouche à l’oreille que la communication humaine fonctionne, et qu’elle est le cœur et l’âme de l’humanité ; on le sait bien.
Now on 10th April, we are delighted to say that many of you have visited our pages! We encourage you to continue to spread our message, as we all know that human communication works by word of mouth and is the heart and soul of humankind(ness). It is the heart and soul of humanity; we know that.
Du fond du cœur
Nous espérons que les graines que vous avez reçues seront heureuses dans vos jardins, qu’elles procureront aux insectes, aux oiseaux et à vous-même autant de plaisir que Charlie en a eu avec la nature lorsqu’il était avec nous dans cet univers. Le jardin de Charlie continue de grandir, grâce à vous.
From the bottom of our hearts
We hope the seeds you were given will be happy in your gardens, provide the bugs, the birds and you with as much pleasure as Charlie enjoyed nature when he was with us in this universe. Charlie’s Garden continues to grow, thanks to you.
These photographs show Charlie’s first Myozyme infusion while using a special exercise bike to improve his muscles’ ability to absorb the medicine, on 26th June 2007.
15th April – International Pompe Day 2022
International Pompe Voices
For International Pompe Day (15th April 2022), the IPA (International Pompe’s Association) are asking people in the global Pompe community to record a short conversation by video, illustrating how strength and resilience is gained through friendship.
International Pompe Day 2022
We are sharing the message to ask you to record a conversation with, for example, a friend, family member or someone within the Pompe community. Talk about your life with Pompe, and how interacting with others makes you, or your child, a stronger person. The subject of your conversation can be anything you like:
– You can make the recording on a mobile phone or using an App such as Zoom; you can record your conversation with cameras switched on or off, whichever you prefer.
– We would encourage you to record the conversation in your native language. We will then use YouTube* to transcribe it (create subtitles) and translate into other languages.
– Please try to keep the conversation to about 5 minutes or less.
– All recordings will be published on the IPA YouTube channel and will be available on our website on International Pompe Day.
*Please note: The IPA cannot accept Audio files because they cannot be easily published on YouTube, but you may like to send a video recording that does not show the people speaking.
Please email your video files or links to ipd2022submissions@worldpompe.org
For full instructions on how best to send your message please click here: International Pompe Day 2022
Voix Internationales de la Maladie de Pompe
Pour la Journée Internationale de la Maladie de Pompe (15 avril 2022), l’IPA (International Pompe’s Association) demande aux membres de la communauté mondiale de la maladie de Pompe d’enregistrer une courte conversation par vidéo, illustrant comment la force et la résilience sont acquises par l’amitié.
Journée Internationale de la Maladie de Pompe 2022
Nous partageons ce message pour vous demander d’enregistrer une conversation avec, par exemple, un ami, un membre de votre famille ou quelqu’un de la communauté Pompe. Parlez de votre vie avec la maladie de Pompe et de la manière dont l’interaction avec les autres fait de vous, ou de votre enfant, une personne plus forte. Le sujet de votre conversation peut être tout ce que vous voulez :
– Vous pouvez faire l’enregistrement sur un téléphone portable ou en utilisant une application telle que Zoom ; vous pouvez enregistrer votre conversation avec des caméras allumées ou éteintes, selon votre préférence.
– Nous vous encourageons à enregistrer la conversation dans votre langue maternelle. Nous utiliserons ensuite YouTube* pour la transcrire (créer des sous-titres) et la traduire dans d’autres langues.
– Veuillez essayer de limiter la conversation à environ 5 minutes ou moins.
– Tous les enregistrements seront publiés sur la chaîne YouTube de l’IPA et seront disponibles sur notre site web lors de la Journée Internationale de la Maladie de Pompe.
*Remarque : l’IPA ne peut pas accepter de fichiers audio car ils ne peuvent pas être facilement publiés sur YouTube, mais vous pouvez envoyer un enregistrement vidéo qui ne montre pas les personnes qui parlent.
Veuillez envoyer vos fichiers vidéo ou vos liens à ipd2022submissions@worldpompe.org
Pour des instructions complètes sur la meilleure façon d’envoyer votre message, veuillez cliquer ici : Journée Internationale de la Maladie de Pompe 2022
Charlie’s Garden and the Rare Disease Organisation are inviting you to light up your homes.
In an effort of global solidarity, you are invited to light or decorate
your home with the Rare Disease Day colours at 7 PM at your local time on
28th February 2022. Read more here.
The rare disease colours are pink, green and turquoise. It would be lovely if you shared photos of your homes in the Facebook post’s comments section. If you don’t have Facebook, you can email them to us at charliesgarden2018@gmail.com
Charles Golder had a rare disease called Pompe’s Disease, which is explained in depth here by Arnold J. J. Reuser, PhD, emeritus professor in Cell Biology & Microscopical Anatomy at the Erasmus University Medical Center, Rotterdam, the Netherlands, (whom Lucy had
the opportunity and honour to meet) and other amazing scientists.
Professor Reuser worked out how to create Myozyme from Chinese hamster ovaries.
Charlie was diagnosed with Pompe’s Disease in 2005 at 15 years old.
This is a photo of Charlie receiving his first infusion in 2007, of what he called “Liquid Gold”, Myozyme, which stabilises Pompe’s Disease.
A very clear presentation of the thought process when receiving a chronic illness diagnosis, which the AGSD and Ben Parker kindly gave us permission to use, from their booklet “Mental Wellbeing and Pompe Disease” April 2021.
Living with Pompe Disease, or any chronic illness for that matter, can be challenging mentally and should be treated. Just as one might seek treatment to deal with other kinds of loss, muscle degeneration is also a form of loss, as this booklet explains.
Not only did Charlie have Pompe’s Disease, he was diagnosed in 2014 with a rare cancer.
Charlie’s Garden is determined to help bolster research into the treatment and potential links between these fatal diseases.
“Rare” is not rare. The statistics say that 300 million people worldwide are affected by rare diseases. That is a lot of people!
Charlie holding his print of Love, by Koko – 8th August 2017
Tuesday 16th November 2021 – Charlie’s 31st birthday present
This year we have made a donation to The Gorilla Foundation on what would have been Charlie’s 31st birthday
Charlie, who was interested in and studied linguistics and communication, also had great affection for a gorilla called Koko – who learned over 1,000 signs from American Sign Language, became friends with Robin Williams and created numerous paintings.
It is an ideal present as this organisation is committed to “Conservation through Communication: to learn about gorillas by communicating with them, and apply the knowledge and empathy thus gained to advance great ape conservation and optimize their care in captivity”. Learn more about Koko and The Gorilla Foundation
The moment when Charlie’s brother Joe gave him a print of Love, by Koko is captured in this photograph. Charlie sent Joe this message: “I’m stunned and speechless 🙂 over the moon! Can’t believe it. How really really amazing. Will give me a big smile every time I look at it.”
Last year we sponsored Freya and we are continuing with supporting her this year too at the Mane Chance Sanctuary
Freya has a kissing spine, which caused her excruciating pain whenever anyone tried to ride her.
“Mane Chance rescues and rehabilitates horses in an environment of trust. The horses then help people. It is a circle of healing.”
(These birthday presents are financed personally and do not use Charlie’s Garden’s funds.)
Special Visit to Mane Chance Sanctuary Summer 2021
Tash’s Special Visit to see Freya and Charlie’s Beech tree, which was planted in his memory at Mane Chance Sanctuary
Freya was sponsored by Charlie’s Garden as his posthumous birthday present on 16th November 2020.
Tash said: “Being one of Charlie’s close friends, I was lucky to be offered the opportunity to visit Freya and Charlie’s tree at Mane Chance Sanctuary on Saturday 24th July 2021 by Charlie’s lovely mum Lucy. My Fiancé Craig wanted to visit with me, but sadly could not due to work commitments. My dad jumped at the opportunity to visit with me, as Charlie was not only highly regarded by me but also my family who had met him.
“When I visited Mane Chance Sanctuary it was a beautiful sunny day. The sanctuary is located close to where I live in Guildford. Not that a different location would have influenced my decision on attending but when I found out his tree was located close to where I live, it made the experience more special knowing I could visit regularly, a place where there is a connection to him. I did not know what to expect and knew little about the purpose of the sanctuary.
“I quickly learnt about the hard work of all the volunteers and the amazing work they achieve rescuing horses in distress and in traumatic situations. I met many horses but the highlight was meeting Freya, a timid horse with soft white and brown markings. Freya required more patience than the other horses due to her past experiences which made her very nervous. However, after a little patience, Freya was greeting us fondly and welcomed the attention.
“After meeting Freya, it was time to visit Charlie’s tree. His tree had a few leaves missing at the bottom from some horses having a munch, but since then a little fence has been created around the tree to stop this from happening again. If you knew Charlie you would know he would not have minded the horses having a few leaves because he was so very kind and probably would have found it funny. Despite the few missing leaves, his tree is luscious and green.
“As I stood and watched, his leaves swayed gently in the wind peacefully overlooking a beautiful pond with running water, creating the most tranquil of settings. His tree is positioned at the top of a hill overlooking over many different pastures. Seeing Charlie’s tree was very emotional in many personal ways. Being able to have a connection to Charlie at this beautiful place was a moment that will be cherished for the rest of my life.
“Lighting candles for Charlie is not new for me, it is something I have done every time I walk into a church or cathedral. When leaving the sanctuary, I was very happy to come across a tree of life candle in their shop. When the candle is lit, it lights up the tree on the candle, which reminds me of Charlie’s tree. Now in the comforts of my own home, every time I light this candle I think of our friendship and how much he is missed.
“Charlie, also known as Frenchy to the majority of his friends from University, was the most special friend anyone could have. His gentle and kind nature was only one part of his amazing personality. His passing affected his friends in many ways and it has been difficult for many of us to deal with our grief. We continue to talk of our beloved Frenchy and the love we have for him, which will never disappear. We miss you Frenchy.”
Freya having a good munch
Charlie’s Beech tree peacefully overlooks this beautiful running water pond
Monday 30th August 2021 – Charlie’s Garden is pleased to announce a new partnership with Pompe Alliance: https://www.pompealliance.com/
This event features two video presentations. Charlie’s Garden has translated the support documents into French for a wider accessibility.
“Nutrition and Exercise” and “My Pompe Journey”
“Nutrition et exercice” et “Mon parcours Pompe”.
We would like to thank: Heather Shorten, MSW Executive Director, Pompe Alliance, Ryan Colburn, Jennie Giusto, Sarah Musgrove. Vanessa O’Connell, Olivier
Cavallero, Administrateur, réfèrent – Maladie de Pompe, Association Francophone
des Glycogenoses, olivier.cavallero@gmail.com.
Charlie’s Garden a le plaisir d’annoncer un nouveau
partenariat avec Pompe Alliance : https://www.pompealliance.com/.
Cet événement comprend deux présentations vidéo. Charlie’s Garden a traduit les documents d’accompagnement en français pour une plus grande accessibilité.
Nous tenons à remercier: Heather Shorten, MSW Directrice exécutive de l’Alliance Pompe, Ryan Colburn, Jennie Giusto, Sarah Musgrove, Vanessa O’Connell, Olivier Cavallero, Administrateur, réfèrent – Maladie de Pompe, Association Francophone des Glycogénoses,
olivier.cavallero@gmail.com.
Reminder from Pompe Alliance: A reminder to the patients and caregivers that Pompe
Alliance are not medical professionals and that you should consult your doctor
if you have any medical questions or before changing your diet or exercise
routine.
Rappel de la part de Pompe Alliance : Nous rappelons aux patients et
aux soignants que Pompe Alliance ne sont pas des professionnels de la santé et
que vous devez consulter votre médecin si vous avez des questions d’ordre
médical ou avant de modifier votre régime alimentaire ou votre programme
d’exercices.
Download/Telecharger Presentation: Diet and Exercise Experience with Pompe Disease – EN – FR
Watch: Nutrition and Exercise Video Presentation on YouTube
Watch: My Pompe Journey Video Presentation on YouTube
Download/Telecharger Presentation:
Jennie Giusto – My Pompe Journey – EN
Jennie Giusto – My Pompe Journey – FR
Download/Telecharger Presentation: Sarah Musgrove Infant Onset Pompe Disease – EN
Lucy and Charlie
Allan, Jamie and Barbara Muir
Friday 23rd July 2021 – Part two of Barbara Muir’s and Lucy Golder’s podcast
Lucy and Barbara continue chatting about the huge life lessons they have learned being part of the Pompe Community.
They discuss Charlie’s inspiration and determination to live life, his dynamic projects and Charlie’s Garden. The valuable and joyful interactions with Pompe People, and the solidarity within the community. Meeting at national events, making friends who understand and support each other.
“Together we are strong” in sharing knowledge and helping each other, finding the positive in the negative, once a (Pompe) Mum always a (Pompe) Mum!
Check out part two over at The Pompe Support Network’s Pompe Voices podcasts.
https://pompe.uk/pompe-voices-podcast
https://pompe.uk/pompe-voices-podcast
Lucy and Charlie
Allan, Jamie and Barbara Muir
Tuesday 15th June 2021 – Lucy Golder and Barbara Muir talk about their sons Charlie and Jamie on a Pompe Voices podcast, by The Pompe Support Network
With kind permission from The Pompe Support Network, we are delighted to share their Pompe Voices podcasts.
https://pompe.uk/pompe-voices-podcast
The latest podcast is in 2 parts: Barbara Muir and Lucy Golder talking about their sons Jamie and Charlie.
Pompe Voices is “a platform for members of the Pompe community to casually chat about their lives with Pompe Disease. Each podcast features a member of the Pompe community in conversation with, for example, their partner, sibling, friend or carer, discussing the good, bad and often amusing stories of living with Pompe Disease.”
Monday 16th November 2020 – Charlie’s 30th Birthday Present
This event was very important to Charlie.
He very much wanted to celebrate his 30th birthday.
Freya at Mane Chance Sanctuary has been sponsored, initially for a year, in Charlie’s name.
Freya has a kissing spine, which caused her excruciating pain whenever anyone tried to ride her.
On the back of the portrait card here, it is written:
“Mane Chance rescues and rehabilitates horses in an environment of trust.
The horses then help people.
It is a circle of healing.”
Charlie would be so proud to be part of this animal-human exchange.
He was also fascinated by animal communication and hoped to be part of a similar project had he lived longer.
Charlie may have died, but his spirit lives on.
Charlie’s Garden wish Freya a long, happy and pain free life at Mane Chance Sanctuary.
Charlie’s Beech Tree at Mane Chance Sanctuary
One of Charlie’s Garden’s goals is to have a tree planted in his honour in a quiet and peaceful place near his home in Vienna. While our daily search continues for “the right spot”, this beech tree, planted at Mane Chance Sanctuary by Charlie’s Garden, brings Charlie’s wish to Surrey.
Charlie’s beech tree will stand as a reminder to all to take care of our environment and enjoy its beauty. As it grows, it will give valuable shade to the rescued horses as they graze the land and will benefit them for many years to come.
Once the coronavirus restrictions are over, we will let you know when Mane Chance is open again to the public. Not only to visit Charlie’s tree but to enjoy all the aspects that this beautiful sanctuary offers.
In the meantime take a virtual tour and enjoy their website. We highly recommend taking a pause at “Our Quiet Space”, day or night, summer or winter, it brings nature into your home wherever you may be.
Monday 13th April 2020
INVITATION
Vous êtes invités à notre après-midi rigolo par
La cie2492 et Charlie’s Garden
L’ART ET LA MANIERE D’ABORDER SON CHEF DE SERVICE POUR LUI DEMANDER UNE AUGMENTATION, d’après Georges Perec
Dimanche 17 novembre 2019 à 16h, suivi par un verre d’amitié.
Chez Lucy Golder
Votre participation :
Les bénéfices du « chapeau » seront divisés en deux entre
Charlie’s Garden et la cie2492
Si vous avez envie d’amener une bouteille ou quelque chose à grignoter et à partager,
je ne vous empêche pas !
Les places sont limitées, les réservations sont obligatoires ! Je confirmerai vos réservations le 2 novembre 2019.