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Old 20-03-17, 07:01 AM   #1
Trish
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Default Spreading Hope with The Pope

For anyone who has not tapped into Social Media lately; or bypasses the Home Page of the HDA website; you might just be excited to hear the latest.

On May 18 2017, the Pope no less, will be meeting with families affected by HD and giving a Papal Blessing!

He will also be addressing an audience of members of the public and the organisers are asking for as many people as possible and as many of The Press as possible to attend.

More details of the background can be read in THIS BLOG . Charles Sabine, in his interview with the Blog's author 'Gene Veritas' states

Quote:
"I had spent a lot of time working for NBC at the Vatican,” he said. “I know that the pope is the hardest person on the planet to get to – much harder than the American president.”

By blessing and speaking to HD-afflicted families publicly, Francis can make a “profound difference” in combatting the shame and stigma surrounding HD, Sabine added.

“We want as much press on this as possible,” he continued. “We want to engage as many people as possible around the world, not just Catholics, to make this into a larger sum than the parts.”

“Furthermore, we hope this will lead to action, both by the Catholic Church, with its strong presence in Latin America, as well as from local and national institutions,” Dr. Muñoz-Sanjuan wrote in an e-mail.

The public event will take place in a 7,000-seat auditorium, where attendees can observe the pope’s interaction with the South American families and HD advocates. Event organizers want as many representatives as possible from the HD community to attend.

“Anyone can go,” Sabine emphasized. “They don’t even need to be HD-affected. They might just care about HD."
To sign up for more details to be sent see HERE .

I confess (excuse the pun ) I am not going. As tempting as it is I don't do travel without Steve and I'm guessing taking a casket to The Vatican could raise a few Security eyebrows
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Old 20-03-17, 01:43 PM   #2
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Default Re: Sharing *Dope with The Pope

.
He's only actually meeting a few Argentinian hd-families, I believe.

"The event aims to shine a light on and bring global attention to the HD community, and to mobilize action to improve the lives of those affected by HD."

I don’t intend to annoy any Catholics or Papish followers here … but, c’mon, where’s this leading? If there was some “religious healing” in this he should be walking in Nancy Wexler’s footsteps in the villages of Maracaibo, Venezuela.

As this is not the case, is he meant to be drumming up some media solution - or just some awareness of … what? What’s all the hype? Charles Sabine only seems to appear when there’s something "glam" going on.

Nancy Wexler, though, is a hunter: the big game she’s spent most of her life pursuing is a particular gene. The search for that gene is a real-life detective story. As Nancy puts it, “There’s a killer on the loose, and it’s my job to find it before it claims more victims.”

HUNTINGTON'S IN VENEZUELA: Neuropsychologist Nancy Wexler on the history of the clinic for Huntington's Disease she helped create in a remote part of Venezuela where the disease is prevalent.

Venezuelan kindreds reveal that genetic and environmental factors modulate Huntington’s disease age of onset [2003]

Venezuelan village key in search for Huntington's cure [2010]

Nancy Wexler in Venezuela Huntington's Disease [2010]

Venezuela village holds cure for hereditary illness [2010]

An Interview with Dr. Nancy Wexler: Discovering the Huntington Disease Gene [2012]

The hunt for the Huntington's gene: a conversation with Nancy Wexler [2016]

Geneticist Dr. Nancy Wexler Leads the Fight Against one of the World's Most Dreaded Hereditary Diseases [2016]

Gene Hunter: The Story of Neuropsychologist Nancy Wexler

Nancy Wexler is a hunter. Her quarry is the gene responsible for a fatal, inherited sickness called Huntington's disease. Nancy's work is a breath-taking race against time not only for others but maybe for herself, as well. Nancy Wexler is the daughter of a Huntington's patient and is at risk for this disease. Finding this gene is a vital step toward preventing or curing Huntington's and thus saving lives. Nancy's work takes her all over the world, specifically to small villages in Venezuela where the mysterious gene affects more people than anywhere else on the globe. Blood samples generously donated by the villagers hold the clues to discovering the gene. Hunter, detective, scientist: Nancy is all these, plus a friend to people everywhere who are affected by Huntington's and other diseases of the brain. Gene Hunter is the powerful story of a courageous and dedicated woman whose passion for science is both personally and intellectually satisfying.

*Dope = information
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Old 20-03-17, 08:07 PM   #3
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Default Re: Sharing *Dope with The Pope

You are entitled to your opinion Allan. I'm not religious etc etc but I think it's a huge media platform which should be taken as a positive thing.

I do take exception to your ungracious comment about Charles Sabine however. He has been working tirelessly in the background for HD awareness and come forward to the foreground on far more occasions than when something 'glam' comes up. His working background is in journalism and media so it's not surprising he uses the skills and contacts he has in that area. I would be utterly hacked off if certain Patrons suddenly got on the bandwagon but Charles is working flat out to help raise the profile of HD globally.
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Old 21-03-17, 06:48 PM   #4
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Default Re: Spreading Hope with The Pope

Ouch Allan! Just one word. .... Or maybe three! Awareness,Awareness, Awareness!
That alone has to be so worthwhile,....and something we talk about a lot on the MB. There was a recent post where yet again someone's Gp had stated he'd never heard of HD!! . This really, really has to change! Charles Sabine has enough to deal with I would have thought - given his own family history and his own HD status! Don't imagine he's doing this just for the fun of it! Differing opinions of course....but a good friend of mine is going to thank the Pope when she visits a couple of weeks beforehand! I have thanked her too!

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Old 21-03-17, 09:03 PM   #5
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Default Re: Spreading Hope with The Pope

I'm a Methodist lapsed so have no idea about the usefulness or not if a papal
Audience . I presume like any powerful person he has lots of requests and there are audiences with various groups each week or month but i don't know and am not sure where they would be reported ? The only time I see him in the media id Christmas and Easter but maybe I am wrong and it will get international attention ?

For the South American families whose faith is no doubt stronger than mine it will be a wonderful experience .

I would love to go I would love to take Mark not because I would expect a miracle but to be with Huntington's disease families that opportunity to meet others is for me the most important part of this event .

If it is anywhere near as successful as the launch event 30/06/2010 then that would be fantastic . On that day every newspaper news programme on radio
National and local reported the event and the associated theme that hd should be hidden no more . Charles Sabine was instrumental in the success of the event .

The awareness will hopefully be as organised and far reaching .

My concern is that while for one day hd is in the spot light the video if the invitation being delivered is glossy and emotional there is how ever a disconnect for people struggling now

I know a family who leave hd person home with commode and cannot get any funding for a down stairs bathroom and thus is being played out across the uk so I can only imagine people's living situations in South America is even more difficult .

We need awareness and that awareness needs to be turned into money to
Provide the best quality care for people living with hd now here and across the world .


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Old 21-03-17, 09:59 PM   #6
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Default Re: Spreading Hope with The Pope

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I’m not lambasting Charles, it’s just that we need something that really works for everyone - beyond a 5 year stint.

HiDden No More

Open letter from Charles Sabine July 1, 2010

APPG on HD - open letter of thanks from Charles Sabine - July 2010

This is an open letter of thanks from Charles Sabine to the hundreds of people who made 30th June a triumph.

So, where to start? Perhaps, with the words of H.E. Luccock: ‘No one can whistle a symphony. It takes an orchestra to play it.’

There are few events that one can describe as an unequivocal success, but Wednesday in London was just that; rightly given high praise in the House of Commons the following day, with a challenge to now have a full debate on Huntington’s disease.

see http://www.publications.parliament.u...mdebate/03.htm (go to question from Williams two pages down)

The triumph of the day is down to one thing and one thing only; teamwork.

As I said in the House on Wednesday, this was never an event that came about as a matter of inevitability. It came about because of the unerring will of many people who wanted it;

Sir Michael Rawlins, who not only gave birth to the idea of the APPG in the first place, but who has nurtured that child with a care and devotion which, combined with the utmost respect in which he is held in the world of healthcare, allowed us to fight so far above our weight.

Martyn Lewis and his family, who not only reached parts of the media that no-one else could have, but added such substance to the launch. Martyn even gave up his home for meetings and achieved tremendous financial backing to boot.

Cath Stanley and the whole team at the HDA. Words fail me to try and convey the contribution that Cath and her team provided in the organisation of the day down to every detail. From the Crowder’s to Cath’s son Dave. Faultless.

Adrian Flook and the support of ’M Communications' - our secret weapon - not just the gift of such a professional PR outfit pro bono, but someone without whose experience and connections in Westminster, we would never have got past our first meeting in the pub.

Sarah Tabrizi, Ed Wild and all at UCL without whom none of us would have the inspiration to do all this in the first place, and whose tireless work from a clinical perspective inspired and educated everyone connected to the launch and most importantly, the press that covered it.

Jayne Innes whose extraordinary contacts, immense experience in politics and tireless work enabled us to set up a lobby system which gave us across-the-board coverage in regions over the entire UK.

All the other volunteers from Track, EHDN and all the HDA regions. The logistics of getting more than seven hundred people, many of them in wheelchairs, from across the country into London, registered, kitted out, into the photo-call, picnic-ed, lobbied and home, would have been a challenge for any army. But not these guys.

Matt Ellison, charged with getting supporters. Our wildest dreams spoke of getting three hundred on the day. After five hundred arrived, we ran out of t-shirts and I and various volunteers had to strip off and donate ours. And still, they kept coming. What a guy.
Quintin Clover. What a phenomenal man. No family connection to HD, no pay, and still he brought together the website and merchandising as if his life depended on it.

The Bickerdike family. The avalanche of media requests through the event, both regarding interviews and the colossal success of Jayne Innes’s work. All handled by one family.

The members of the Care group who, guided by the tireless Cath Stanley, gave so much of their expertise and time to ensure that we have a manifesto for the APPG to work on in the coming months and years.

Sponsors; Don and Shirley Moody, Jane Cavanagh, Nick Doff, NICE TV, and Doctor and Mrs AR Gillespie, who between them, paid for the entire event. Yet again; nothing could have happened without them.

Our patrons Tony Hadley and Sarah Winkless. Patrons like this are truly inspirational when they don’t just want to talk to the media about what a great thing they are doing, but spend their time talking and having photographs with anyone who wanted. Real people.

Nancy and Alice Wexler. To have these two giants of the history of Huntington’s disease come so far to support this event said everything about the significance of the event and the nature of two very special people. We were both honoured and inspired by their presence.

And all those families who came from every corner to make people take notice. I will say it again; without you, this event would have been a weak and feeble shadow of the momentous day it became.

You should all feel very, very proud to have been part of such a moment in history. I certainly am.
Charles Sabine


Obviously a brilliant day - but roll slowly forward 5 years and the APPG [HiDden No More] had disbanded despite the heroic efforts of Charles, Trish and many others.

“… the advice of all the MP’s in the room was that we needed to join together with other similar groups to have a louder voice.”

in 2010 “HiDden No More” was a quasi-political endeavour; today “HDdennomore” is a quasi-religious undertaking trying to claim some higher ground; its next reincarnation could be as a quasi-sports banner\strapline at global venues. I just think that, maybe, there needs to be more of a “crowd-funding” feel to any “call to arms” for HD.

None of us like false hopes and platitudes. We need to be given significant, definitive responses to our ongoing HD family situations - and our many unanswered questions, whether they be clinically, medically, socially, therapeutic or recreationally derived.

In this world of corrupt governments, dishonest and freakish politics; criminal bankers and businessmen; warfare; famine; the desperate plight of nomadic asylum seekers and refugees, etc. I often wonder where we are going, who is leading us and whether we will ever reach a place that we can all call “Peace on Earth” or “Goodwill to all Women, Children and Men” - or just plain satisfaction will do.

Negative or Positive: Life is Strange

.
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Old 22-03-17, 06:49 AM   #7
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Default Re: Spreading Hope with The Pope

Thank you for your comments everyone but I'm aware we are going off into other areas now and I would like to bring this back to my original purpose. That being to make people aware of an event that is coming up on May 18.

I would be grateful if we could just keep this to the links for the Event now and people can make up their own minds as to whether they want to subscribe for more information or not.

Event details can be seen HERE
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Old 03-04-17, 06:45 PM   #8
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Default Re: Spreading Hope with The Pope

There was a mailshot at the weekend from the HDennomore Team.

I have reproduced the details below:

Hello—

Thank you for subscribing to receive updates from HDdennomore, and welcome to the HDdennomore official newsletter.

Here, we will be keeping you up-to-date on everything you need to know in preparation for Pope Francis' Special Audience with the Huntington's Disease Community in solidarity with South America on May 18.

On this day, Pope Francis will meet with families affected by Huntington’s from South America – where prevalence of the disease is among the world’s highest. Families from Colombia, Venezuela and Argentina will join an audience of thousands to help drive awareness of HD and to lift the stigma around the disease.

Date: May 18, 2017
Time: Doors open at 8 am, event starts at 10 am
Location: Aula Paolo VI (Sala Nervi), Vatican City, Rome

EVENT REGISTRATION IS NOW LIVE. IF YOU ARE PLANNING TO ATTEND, PLEASE CLICK BELOW TO REGISTER.

hrough this newsletter, we will also be sharing videos, photos, and stories (take a look below for our first video!) to help you get the word out about the event and this important cause - because together we can achieve more for the HD community.

If you are not planning to attend, or are not sure yet, no problem. We encourage you to please help us bring HD out into the open by sharing the below content with family and friends and on your social channels.

Don't forget— you can also stay informed via our website: HDdennomore.com.

It’s time for Huntington’s Disease to be Hidden No More!
- The HDdennomore team REGISTER HERE

READ. WATCH. LISTEN. SHARE.

Here, you'll find content created by the HDdennomore team to help you get the word out about HD and the upcoming event.

We already have 4 things you can do to spread the word. Some ideas include:

1. Invite others to the event.

We welcome you to forward this email to your network.

Or click here to download the official invitation to share with your social channels.

2. Meet the families travelling to Rome.

Families affected by HD from Colombia, Venezuela and Argentina – where prevalence of the disease is among the world’s highest – will be travelling to meet with the Pope on May 18. Watch them receive their personal invitations, and share the video.

You can see more videos like this by subscribing to our YouTube Channel

3. Encourage friends and family to sign up for this newsletter.

Forward this email to your contacts so they stay in the know. If they'd like to subscribe to receive future newsletters, they can do so by clicking here.

4. Join the conversation.

Join the global HD conversation by using our hashtag: #HDdennomore
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Old 06-04-17, 12:36 PM   #9
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Default Re: Spreading Hope with The Pope

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Ok, on the 18th May Pope Francis, an Argentinian, is to recognize the devastating plight of those living with and affected by HD in South America. They say he will host the world’s largest gathering of the HD community. How do they know this? We know that young individuals and families from Colombia, Venezuela and Argentina will travel to meet with the Pope and join an audience of thousands [how do they know this?] to drive awareness of HD and to lift the stigma around the disease. Are national HD associations funding this, as well as Griffin and Teva, to help HD-families attend this one-off event?

The blurb says: A warm welcome is extended to the entire HD community to attend.

Nancy Wexler; Charles Sabine; Michael Rawlins, an active HD researcher and advocate; Ignacio Munoz-Sanjuan a Neuroscientist; and Elena Cattaneo, Huntington's researcher in Milan and Lifetime Senator in the Italian Parliament will be in attendance. Whoops, nearly forgot the 28 South American youngsters. Anyone else going? Any celebrities or Big Names in Medical Research? Anyone from the HDA?

So, I’m looking at flight and hotel deals and up pops this:

Flight prices for Rome on 17 May - 19 May are likely to rise 18% in the next 6 days.

Ok, better get it booked now then.

17.50 to 21.20: London Gatwick to Rome Fiumicino - Leonardo da Vinci Intl. 2h 30m
19.55 to 21.35: Rome Fiumicino - Leonardo da Vinci Intl. to London Gatwick 2h 40m

Oh, first of all we’ve got to get to Gatwick. Hopefully, he’ll be up in time and we can get a taxi to the station; an hour and a half to Gatwick; two hours hanging around at Gatwick; the flight is 2 hours 30 mins; then another hour or so [2 hours tops] to get to the hotel. Flaked.

Expedia have given me 3 people x flights plus hotel for 2 nights =

Price: £557.15
Your Savings: £53.35
*Taxes & Fees: £120.10
Total due now: £623.90
Due at hotel: €36.00

EasyJet: 1st checked bag: £30.00 - £45.00; 2nd checked bag: £30.00 - £45.00
Train fares to Gatwick and return: £75.00
*that reminds me: Taxis to the Vatican and back.

Three days in Vatican City for an HD-person with wheelchair, family member and Carer [sharing a room!] … that’s about £800 so far - without a bite to eat yet or, more importantly, a glass or two of vino rosso!

We can’t really do it, though, because of wheelchair and dietary issues. Then there’s the possible vomiting, incontinence and bathroom issues - oh, and the constant smoking. No, I think he’d rather stay at home and enjoy himself. The £800 would be better spent on functional domestic necessities – if we had it.

It could be a Big Splash in the media though: www.todayscatholicnews.org/wp-content/uploads/2017/02/20170215T0904-7957-CNS-POPE-AUDIENCE-HOPE.jpg ... and, of course, it’ll all be in Spanish. Doors open at 8.00am. So get there early if you're going as the seating capacity is only 6300: https://i.ytimg.com/vi/XKU4KBl8tQs/maxresdefault.jpg

I hope that all participants have a fulfilling experience ...

.
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Old 06-04-17, 02:18 PM   #10
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Default Re: Spreading Hope with The Pope

Quote:
Originally Posted by Allan View Post
.
Ok, on the 18th May Pope Francis, an Argentinian, is to recognize the devastating plight of those living with and affected by HD in South America. They say he will host the world’s largest gathering of the HD community. How do they know this? We know that young individuals and families from Colombia, Venezuela and Argentina will travel to meet with the Pope and join an audience of thousands [how do they know this?] to drive awareness of HD and to lift the stigma around the disease. Are national HD associations funding this, as well as Griffin and Teva, to help HD-families attend this one-off event?

The blurb says: A warm welcome is extended to the entire HD community to attend.

Nancy Wexler; Charles Sabine; Michael Rawlins, an active HD researcher and advocate; Ignacio Munoz-Sanjuan a Neuroscientist; and Elena Cattaneo, Huntington's researcher in Milan and Lifetime Senator in the Italian Parliament will be in attendance. Whoops, nearly forgot the 28 South American youngsters. Anyone else going? Any celebrities or Big Names in Medical Research? Anyone from the HDA?

So, I’m looking at flight and hotel deals and up pops this:

Flight prices for Rome on 17 May - 19 May are likely to rise 18% in the next 6 days.

Ok, better get it booked now then.

17.50 to 21.20: London Gatwick to Rome Fiumicino - Leonardo da Vinci Intl. 2h 30m
19.55 to 21.35: Rome Fiumicino - Leonardo da Vinci Intl. to London Gatwick 2h 40m

Oh, first of all we’ve got to get to Gatwick. Hopefully, he’ll be up in time and we can get a taxi to the station; an hour and a half to Gatwick; two hours hanging around at Gatwick; the flight is 2 hours 30 mins; then another hour or so [2 hours tops] to get to the hotel. Flaked.

Expedia have given me 3 people x flights plus hotel for 2 nights =

Price: £557.15
Your Savings: £53.35
*Taxes & Fees: £120.10
Total due now: £623.90
Due at hotel: €36.00

EasyJet: 1st checked bag: £30.00 - £45.00; 2nd checked bag: £30.00 - £45.00
Train fares to Gatwick and return: £75.00
*that reminds me: Taxis to the Vatican and back.

Three days in Vatican City for an HD-person with wheelchair, family member and Carer [sharing a room!] … that’s about £800 so far - without a bite to eat yet or, more importantly, a glass or two of vino rosso!

We can’t really do it, though, because of wheelchair and dietary issues. Then there’s the possible vomiting, incontinence and bathroom issues - oh, and the constant smoking. No, I think he’d rather stay at home and enjoy himself. The £800 would be better spent on functional domestic necessities – if we had it.

It could be a Big Splash in the media though: www.todayscatholicnews.org/wp-content/uploads/2017/02/20170215T0904-7957-CNS-POPE-AUDIENCE-HOPE.jpg ... and, of course, it’ll all be in Spanish. Doors open at 8.00am. So get there early if you're going as the seating capacity is only 6300: https://i.ytimg.com/vi/XKU4KBl8tQs/maxresdefault.jpg

I hope that all participants have a fulfilling experience ...

.
Allan

Don't shoot the Messenger

In the absence of anyone coming up with anything better; with more time to organise and on the UK shores; I am posting up the details of a forthcoming event. It's not a party political broadcast or anything detrimental to the UK HD Community. Please can we leave this Thread as an Event invite rather than having a personal dig and being so negative about everything. I do get it that it's probably beyond the means of many people in many countries but it is still something that is worth highlighting.

If you want me to ask the HDA to pull this thread where it seems to be annoying you I will do so but please stop pulling the whole thing apart as, even with the lack of resources available to people to be an active part there are still some people who will be grateful that it is happening with, or without their being able to be there.
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