birdshot horus

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10TH ANNIVERSARY OF HORUS BIRDSHOT


Hello everyone, 

My name is Sylvain Mignon and I am the founding president of the Horus Birdshot association 

The Horus Birdshot Association is a non-profit charity dedicated to Birdshot-type retinochoroiditis, an extremely rare and potentially blinding degenerative disease of the retina. 

It concerns, to date, approximately 3,500 people in the world. 

2020 will have been a particularly difficult year for everyone. It’s the least we can say! I sincerely hope that 2021 will be more lenient, although the start of the year promises to be particularly difficult, both morally and socially. Nevertheless, in the midst of all this media-scientific cacophony, it appears that 2020 is a very special year for our association. Indeed. On December 11, 2020, we will be celebrating the tenth anniversary of its creation. 

Already 10 years! 

Starting from nothing, we had to create everything, put everything in place, and I'm happy to note that thanks to all this work, things have been able to evolve. Indeed, Horus Birdshot is now 

• Almost 4000 people who follow us on social networks: patients and their families and friends, of course, but also many professionals, students, who are interested in our actions and the evolution of ophthalmology . 

• More than 35,000 visits to our website from Internet users from around sixty countries. 

• A discussion group on facebook, which allows everyone to learn from each other. 

• More than 200 various operations carried out during this period • More than a hundred students involved 

• Professional athletes involved 

• We published an 84 page booklet on illness. 

• Birdshot days were organized in Paris. 

• And of course, a research team led by Prof. BREZIN in Paris. 

So, yes, we've been around for 10 years, and unfortunately, we still don't have a cure for the disease. We started research at the end of 2018, with a cohort of 500 patients who are followed in PARIS. 

2019 was the year of genetic sequencing of these blood samples. 2020 will have been the year of the first publications, with the young Dutch researcher, Jonas KUIPER. 

For 2021, we are awaiting a more complete study that is currently putting all the teams into action. 

Antoine Brézin and Dominique Monnet, from APHP in PARIS 

Jacques Cohen, researcher at the REIMS hospital 

Jonas Kuiper, researcher in the netherlands. 

Jennifer Thorne in Baltimore. Gary Holland at UCLA, 

Professor Ralph Levinson having retired. 

The best teams in the field are focused on this ultimate goal: finding a cure for the disease! As you can see, things are progressing, even if things are not looking good enough for my taste ... It is always extremely difficult to sum up 10 years of work in a few lines and in a few minutes, but I sincerely wish to be optimistic about the future, and I wish you could be as much as I am. Even if we will not be able to celebrate these 10 years as worthily as I would like, because of the security measures induced by the Covid-19 pandemic, I am counting on you to be delighted with all the work that we have implemented and which will bear fruit, soon, I'm sure. 

In the meantime, it is crucial that you continue to take care of yourself and take all necessary measures to combat the coronavirus; and especially think of our American friends who continue to suffer greatly from it lately. As I told you, it is difficult, if not impossible, to summarize 10 years of work in a few lines or in a few minutes, but I wanted, today, to share with you the satisfaction that it brings me, to see more in addition to people following us in all of our actions. In conclusion, I sincerely hope that we will not be celebrating our 20th anniversary ... 

Until we can perhaps celebrate these 10 years in a more convivial way, I wish you and your families the best possible end of the year. Take good care of yourself. 

See you soon… 

SYLVAIN #BIRDSHOT

A LIVE LIVE No.4 SUNDAY SEPTEMBER 20, 2020 A 6:00 p.m. (French time)

LIVE No.2



"LIVE n°3" 

LIVE No.1

ON THE APPELAIT BIBI - Tribute to our mascot, already 1 years old.

lien : https://www.facebook.com/association.horus.birdshot/videos/4124973724240629/?t=0


28 09 2019 , sunshine tour - Golf

After a final day in the par (72) our young ambassador Horus birdshot, places a very honorable 29th place in Port Elisabeth , on the Sunshine Tour in South Africa .
Bravo Riekus Nortje !!!!

OPERATIO OBJECTIF "EN VUE 2020" - COLLECTE

After a final day in the par (72) our young ambassador Horus birdshot, places a very honorable 29th place in Port Elisabeth , on the Sunshine Tour in South Africa .
Bravo Riekus Nortje !!!!

28 09 2019 , Aurélie Cervesa cherche de l'aide pour un evenement- Montpellier.

Event Horus birdshot Montpellier -

Aurélie Cervera, like all of us, is a birdhot sufferer. Nevertheless, at the age of 34, she continues to work for her favourite sport: football.
She lives near Montpellier and wants to organize an event for the association Horus birdshot in May 2020.
It will need help and support from the sick in this region. Also, thank you in advance for reading the messages she sent me and, perhaps, will make you want to be by her side.
Friendships to all,
Sylvain

September 3, 2019, genetic research on the birdshot disease is about to give its first results -


VERY IMPORTANT: INFO HORUS BIRDSHOT -
September 3, 2019, genetic research on the birdshot disease is about to give its first results -
At the end of 2018, I announced that we had concluded agreements with an American laboratory and that all this required several phases:
1 / repatriate the 500 blood samples from Reims to Paris
2 / transfer to a particular storage tank
3 / Agree on the research protocol with the labporatoire / Transfer the samples to the United States
4 / Sequencing of these 500 samples
5 / Analyze the results of this sequencing, which is the longest and most difficult process.
I exchanged yesterday with Professor Brézin on this subject, and I am happy to confirm that the 500 samples have been sequenced, and that we now begin the analysis and conclusions.
This research should provide us with insights into future treatments, at least hopefully reasonably. However, you know that the disease does not have only genetic factors (only 95% of the patients are HLA-A29 +) but this must logically make things progress considerably.
I will keep you informed of future essential information on the subject.
Sincerely,
Sylvain MIGNON
Pdt HB.

TRISTESSE: Our mascot Bibi left us in July 2019.


It is with great sadness that I announce that Bibi (his real name, Extra baby of the sacred tipi) noous left, after fighting with courage and good humor, for more than 12 months, against cancer.
She left in the highest dignities, calmly.
Our other Jazz mascot being inconsolable, we decided to take a second mascot, Plume, a young border collie of 3 months and a half that brings us the joy and the comfort that brought us Bibi.
We will never forget it as it was exceptional.


STATE OF THE BIRDSHOT RESEARCH 06/2019

Recent Dutch and Spanish genetic research on Birdshot has revealed that changes in ERAP enzymes - molecules that interact closely with HLA (-A29) in the immune system - may explain why some people with HLA-A29 may develop Birdshot. Functionally, the activity of ERAP enzymes is often "unbalanced" in Birdshot. Researchers are currently studying how HLA-A29 and PIUs affect immune system communication in the eyes.
Thanks to Jonas Kuiper for this post.

It's technical and interesting
Sylvain
LINK

CAMPAGNE DE DONS 2019 -

CAMPAGNE DE DONS 2019 -

CAMPAGNE DE DONS 2019 -

Riekus NORTJE !! "The beautiful story" - APRIL 2019

INFO HORUS BIRDSHOT -
News from our ambassador from South Africa, Riekus NORTJE !!

"The beautiful story"


Riekus is a 28-year-old man with a promising future in professional sports. Indeed he is currently a professional golfer on the "Sunshine Tour", one of the most famous circuits in the world. Africa di Sud has already given us many exceptional players (Ernie Els, Retief Goosen, Louis Oosthuizen, ...) but especially a legendary player: Gary Player!
For experienced golfers, these names are well known and recognized, for the uninitiated, we can reasonably compare Gary Player to Zinedine Zidane, one of the best players in the history of his sport!
So we can say that Riekus was born in a country of talented sportsmen.
If health is an asset in this demanding sport, it is not the same for his father, Ferdie Nortje, suffering from the disease of the birdshot apparently ill-treated and because of which he lost a good part of his vision! A misfortune never arriving alone, his uncle, the twin brother of his father, has just learned that he was suffering too!
It is these different factors that have driven Riekus to become our media ambassador, and especially the birdshot ambassador to South Africa and wherever he proudly represents his national colors.
We will follow him as he moves. We will follow his results and, all together, we will give him an extra strength, which, I am sure, will help him even better, to be realized in his difficult career of professional sportsman (I know something !!) but still, in his life as a man!
Thank you again Riekus, and we wish you all the best in the future!
Congratulations to Ferdie, for giving such values to his son!
Thank you all for encouraging and following Riekus.
friendships
Horus Birdshot Mignon Sylvain
#birdshot

LInk : Riekus Nortje

Plus...

10TH ANNIVERSARY OF HORUS BIRDSHOT


Hello everyone, 

My name is Sylvain Mignon and I am the founding president of the Horus Birdshot association 

The Horus Birdshot Association is a non-profit charity dedicated to Birdshot-type retinochoroiditis, an extremely rare and potentially blinding degenerative disease of the retina. 

It concerns, to date, approximately 3,500 people in the world. 

2020 will have been a particularly difficult year for everyone. It’s the least we can say! I sincerely hope that 2021 will be more lenient, although the start of the year promises to be particularly difficult, both morally and socially. Nevertheless, in the midst of all this media-scientific cacophony, it appears that 2020 is a very special year for our association. Indeed. On December 11, 2020, we will be celebrating the tenth anniversary of its creation. 

Already 10 years! 

Starting from nothing, we had to create everything, put everything in place, and I'm happy to note that thanks to all this work, things have been able to evolve. Indeed, Horus Birdshot is now 

• Almost 4000 people who follow us on social networks: patients and their families and friends, of course, but also many professionals, students, who are interested in our actions and the evolution of ophthalmology . 

• More than 35,000 visits to our website from Internet users from around sixty countries. 

• A discussion group on facebook, which allows everyone to learn from each other. 

• More than 200 various operations carried out during this period • More than a hundred students involved 

• Professional athletes involved 

• We published an 84 page booklet on illness. 

• Birdshot days were organized in Paris. 

• And of course, a research team led by Prof. BREZIN in Paris. 

So, yes, we've been around for 10 years, and unfortunately, we still don't have a cure for the disease. We started research at the end of 2018, with a cohort of 500 patients who are followed in PARIS. 

2019 was the year of genetic sequencing of these blood samples. 2020 will have been the year of the first publications, with the young Dutch researcher, Jonas KUIPER. 

For 2021, we are awaiting a more complete study that is currently putting all the teams into action. 

Antoine Brézin and Dominique Monnet, from APHP in PARIS 

Jacques Cohen, researcher at the REIMS hospital 

Jonas Kuiper, researcher in the netherlands. 

Jennifer Thorne in Baltimore. Gary Holland at UCLA, 

Professor Ralph Levinson having retired. 

The best teams in the field are focused on this ultimate goal: finding a cure for the disease! As you can see, things are progressing, even if things are not looking good enough for my taste ... It is always extremely difficult to sum up 10 years of work in a few lines and in a few minutes, but I sincerely wish to be optimistic about the future, and I wish you could be as much as I am. Even if we will not be able to celebrate these 10 years as worthily as I would like, because of the security measures induced by the Covid-19 pandemic, I am counting on you to be delighted with all the work that we have implemented and which will bear fruit, soon, I'm sure. 

In the meantime, it is crucial that you continue to take care of yourself and take all necessary measures to combat the coronavirus; and especially think of our American friends who continue to suffer greatly from it lately. As I told you, it is difficult, if not impossible, to summarize 10 years of work in a few lines or in a few minutes, but I wanted, today, to share with you the satisfaction that it brings me, to see more in addition to people following us in all of our actions. In conclusion, I sincerely hope that we will not be celebrating our 20th anniversary ... 

Until we can perhaps celebrate these 10 years in a more convivial way, I wish you and your families the best possible end of the year. Take good care of yourself. 

See you soon… 

SYLVAIN #BIRDSHOT

ANSWERS TO THE QUESTIONNAIRE

QUESTIONNAIRE

This section will bring together all the important information directly related to the association Horus birdshot.


News

ORDER OF THE HORUS BIRDSHOT BOOKLET ON BIRDSHOT DISEASE IN THE WORLD -
Wherever you are in the world)
Email:

84 pages and will be enriched with your testimonies (anonymous of course) as well as various documents.
Quality draws.
Our cost price is 12 euros, so to buy it, thank you for making a minimum donation of 15 euros in France (20 abroad) (or more, donations are free and are entitled to 66% tax deduction)
If you have a real problem with that, leave me a message)
An English version is about to come out soon.
Don't hesitate to share.

Friendships to all,

Sylvain.