Vatican City, May 19, 2017 / 03:24 pm (CNA/EWTN News).- Pope Francis’ gathering this week with a group of Huntington’s disease patients was a major inspiration for those seeking to increase awareness and research about the condition.
“In the U.S. this is HD Awareness Month, so we’re working on just telling the story of families affected by Huntington’s disease, and this brings it to a whole different platform,” said Louise Vetter, CEO of the Huntington’s Disease Society of America.
“Really, with Pope Francis setting the tone I think it offers so much hope and inspiration.”
On Thursday, Pope Francis became the first world leader to publically recognize the plight of those suffering from Huntington’s disease, as he welcomed an audience of some 150 people with the condition. The pontiff stayed for nearly an hour after the audience to offer each individual a hug and a greeting.
Huntington’s disease (HD) is an incurable genetic brain disorder characterized by rapid, uncontrollable muscle movement known as chorea. As the disease progresses, it can lead to loss of control over speech and memory, dementia and death.
The gene which causes Huntington’s was discovered nearly 25 years ago, but there is still no cure and relatively limited treatment options.
This is especially true for people living in South America, where prevalence of the disease is almost 1,000 times higher than in the rest of the world and often combined with extreme poverty. Because the disease affects families generationally, they are often caught in a cycle of need.
In 2013, Ignacio Munoz-Sanjuan, a neuroscientist working to develop treatments to fight the progression of Huntington’s disease, traveled to South America to see first-hand the difficulties faced by communities with high numbers of Huntington’s patients, particularly in Venezuela and Colombia.
While there, he noticed that a lot of the help people needed wasn’t related only to the immense difficulties of the disease, but had even more to do with living in conditions of extreme poverty, such as no food, no water, no clothes, poor housing, and almost no medical support.
This led to his founding of Factor-H, a humanitarian project specifically to help with non-medical related issues for people in communities with high concentrations of Huntington’s patients.
One of the biggest problems faced there, he told CNA, is that there is no institutional support to provide food or assistance to the communities.
People aren’t able to work because they are often caring day and night for multiple terminally ill family members. And in some communities, “people barely have enough food to eat once a day. They have no sanitation, no running water,” he explained.
Compounding the challenge is the fact that many Huntington’s patients require up to 5,000 calories per day – more than twice the caloric needs of an average healthy adult. Finding adequate nutrition when food is already scare is often impossible.
“In one of the towns in Venezuela, probably the biggest cluster (of Huntington’s patients) in the world, I met a Catholic priest who is there locally and who is trying to do what he can, but there’s nothing institutionalized.”
Munoz-Sanjuan found it very difficult to find ways to help in Venezuela and ran into a lot of roadblocks. It’s hard to send money because of the rate of inflation, he said, and after the border with Colombia was closed he could no longer send food via the neighboring country.
He said that he thinks the more people know about the problem, though, the more they will want to help.
“The problem is concentrated in a few locations and there are not that many people, a few thousand people affected in each one of these towns, so it’s a manageable problem if we get organized. But I think that’s really where the Church can play a big role,” he said.
Because the disease is relatively rare, it is not well-known, and non-governmental organizations generally focus their support elsewhere.
Munoz-Sanjuan also felt “that the scientific community owed something back to those people because they participated in studies for many years that led to the cloning of the gene, but they still don’t have access to the genetic test and really things haven’t changed much for them.”
“I thought that one of the few institutions that could potentially help would be the Catholic Church,” he said.
This gave birth to the idea for the global meeting at the Vatican and the audience with Pope Francis, which took place May 18 with some 1,700 people from 16 different countries.
The meeting with Pope Francis was called “HDdennomore” (pronounced “hidden no more”) and put on in special solidarity with South America. Two families from Venezuela, two from Colombia, and one girl from Argentina – all affected by the disease in different ways – were brought to the Vatican by Factor-H to meet the Pope.
Present at the audience, in addition to 150 Huntington’s patients, were members of the medical and scientific communities who treat patients with Huntington’s and perform research on how to prevent the disease or slow its progression.
“I know there are some people from Caritas and some cardinals that are really interested in helping, but I think that most Church officials, like many people in institutions, have never really heard of the disease, or the magnitude of the problem in their countries,” Munoz-Sanjuan said.
He hopes this event is the beginning of a conversation and will help shine a light on the disease and on what the conditions are like in many communities.
For Vetter, the meeting was a big step forward in efforts to combat the “devastating illness.”
“We really have a call to action to raise awareness of Huntington’s disease and the need for community to really be involved caring for these families,” she said.
“We’re thrilled to be part of this global effort and be able to pull off that shame and offer the opportunity for these families to feel validated,” she continued. “To be able to help society offer that reassurance and for the Church to really set that tone – it’s incredible.”
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I wish two things:
1. That the Vatican cease defining itself as a State. We are a Church. We exist in the world but are not of this world. States are creations of this world.
2. Stop interfering in the temporal affairs of the United States. As a Catholic, I find the Vatican’s statements unwelcome.
The Vatican has been both the Church and a city-state ever since the 1929 Lateran Treaty recognized the papacy as more than a “prisoner of the Vatican” (a consequence of the revolutionary loss of the Eternal City and the historically curious papal states to the new and larger nation-state of Italy, in 1870). https://en.wikipedia.org/wiki/Vatican_City
The status as a state among states renders possible an ear and a voice among the current political idiom of nation-states, although membership in the United Nations remains that of a non-member Permanent Observer State, since 1964.
This distinctive membership restriction is surely a good thing, since it protects the Vatican and the universal Catholic Church from being identified as just another member among the 193 member states–as you correctly argue should never be the case.
Cardinal Parolin, the architect of Communist-Party-Secret-Accords is a man who should not be posturing about governing with “wisdom,” etc.
And citizens faithful to Christ have no interest in getting “dialogued” by the apostate-and-homosexual-art-curator Spadaro.
The word obtuse seems apt.
CHRIS: You say it better than I. Thanks
@ Peter Beaulieu. Always thought it curious too that the Church became the equivalent of a nation. Although the title was modified to papal states. Certainly an oddity on the surface.
You’re probably aware that Pippin King of the Franks ceded the territories it had wrenched from the expanding Germanic Lombards. At the time during the 8th century it also benefited the papacy to rely on Frankish protection rather than the Eastern Byzantine empire due to imposition of taxes, and growing disagreement on doctrine examples, iconoclasm, filioque clause.
It can be argued either way whether Italian unification during the late 19th century resulting in the loss of the papal states benefited Catholicism. The transition from a temporal power [we even had a warlord Pope Julius II expanding territory] to a visibly more spiritual authority. From the day of revolutions of Pius IX to the despotic political movements of Pius XII the greatly territorially reduced Vatican State seemed a greater presence for the advocation of justice.
Deacon, I’m not sure if my understanding is correct. If you have time, please clarify for me. Thanks. My understanding is that Vatican City is a “state” like any other nation–a very tiny State, but still a state with a seat and vote at the United Nations and the right to offer opinions, defend itself, send troops to war, provide aid for nations experiencing a disaster or conflict, etc.
But Holy Mother Church is a Church, THE Holy Catholic Church that Jesus Christ Himself founded.
One question that I have–is the Pope the “president” or “mayor” of Vatican City, or are other leaders, perhaps even non-clergy or non-religious, elected or appointed? Or is Vatican City a monarchy with no other leadership than a king (the Pope?).
The latter Mrs. Whitlock. The Pope is the Head of State. He probably has infinitely more power when it comes to the Vatican City/State than the King of Great Britain and Northern Ireland who is a Head of State. He can name and depose at will. He answers to no human person.
Yes “ in the World but not of the World” I’ve been saying this for a long time, but that said the reality is that the Vatican IS a state and as such must operate as one. Unfortunately the Pope has to wear two hats as both head of State and head of Church. Not an easy task and not of his making. Thus he has an obligation to act as a voice and mediator in temporal affairs. Not to take sides or make alliances like other nations do is very difficult. To study the position of the Papacy during the Second World War illustrates how difficult this can be.
Perhaps one day we will have to abandon the Vatican and become a pilgrim people, but until then we must operate within this very messy and imperfect arrangement and allow the Pope to make mistakes just like any other temporal ruler.
And, yet, there’s a difference between the Vatican and the Holy See.
These two terms are not interchangeable. Here are the new details about how all this fits together: https://www.loc.gov/item/global-legal-monitor/2023-06-05/vatican-city-state-pope-francis-issues-new-constitution/
I wouldn’t advocate abandoning the Vatican. The Vatican is no larger than any major university campus in the USA. I just think we need to stop thinking of the Pope as Head of State. He is a moral/spiritual leader of Catholics and the Catholic Church. He should be seen as if he were a CEO. There are probably bishops in the USA who have control over large swarths of real estate but have no temporal authority. The Pope is simply Bishop of Rome – primus inter pares.
Most Catholics do not know tht DT saved the NY Catholic schools. During the Wuhan virus crisis, the NY Catholic schools were dire need of funds. They needed billions to survive. The Cardinal called DT for help to save the Catholic schools: “We need billions or we will have to close.” President DT picked up the phone and in 15 minutes he raised billions. Thus he saved the Catholic schools. Amazing. See his speech at the annual Al Smith Catholic dinner for October 2024 in the presence of the Cardinal. His speech starts at min. 29:00; during the speech he looks at the Cardinal and recollects this episode at min 56ff.
https://www.youtube.com/watch?v=cAwbHmrplak
Okay let’s ignore his lack of morals; his admiration of dictators; his desire to become one; his racist attitude; his threats of violence toward those who disagree with him;
May God have mercy on him and all of us who will lose precious rights under his presidency. I pray for his soul and all who voted for him
Dont bother praying for me, darling. I will pray for you. How sad that you have swallowed whole all of the untrue and slanderous propaganda about Trump which was spread around by the DEMs and their media minions. This is my third time voting Trump , and I am thrilled that he won. I have a Masters Degree,live in an urban area of a blue state, and am not remotely uninformed. Had more people not believed the untruths about him the last election, the country and the world would have likely been saved a lot of pain these last 4 years.
In this election, Trump gathered not only an electoral win but ALSO the popular vote by close to 5 million votes people who are sick of being disparaged and demeaned. A joke about being a dictator is just that–a joke. If you imagine its ok to disparage half the population of the country you need to check your thought processes. I have NEVER heard Trump make a racist remark ( another lie). And if by your fear of “losing precious rights” you are talking about the preservation of abortion, you are on the wrong forum. Trump has never suggested taking away ANY rights from any citizen( unlike the Dems, who have used censorship and lawfare with abandon and continue to do so with abandon against Trump and his lawyers). Maybe Dem governors could speak to their people about the recent election results, and liberal loss, with a tad less hysteria. It might help them.
silly and untrue description of the president. He never threatened violence against those who disagreed with him.. where did you get that? Peace? .. only under him has there been peace, not under biden or obama. How is he racist? He funded black universities, which obama refused to do. Admiration of dictators? I don’t even know how to deal with that one… check your facts.
Well, 72 million people disagree with you. What’s the probability that they’re all wrong and you are right? That would be zero according to my math.
Wisdom? We shall see. All this talk of revenge and retribution is hardly wise. Trump has an opportunity to be statesmanlike. Let’s hope that he takes the high road for a change.
I have never heard Trump talk about revenge. Although, WINNING is the best revenge I suppose. The only people talking about revenge and fighting are the democrats right now. Like the govs of California, NY and Illinois. What news media are you watching?? Take a look at something with more balance.
What virtue postering from the morally bankrupt socialist left!
I’d be happy if the Vatican tended to its own wisdom instead of lecturing others.
Given their Marxist march towards a full embrace of moral relativism, wisdom is something they they can’t even stumble over.
silly and untrue description of the president. He never threatened violence against those who disagreed with him.. where did you get that? Peace? .. only under him has there been peace, not under biden or obama. How is he racist? He funded black universities, which obama refused to do. Admiration of dictators? I don’t even know how to deal with that one… check your facts.
Did Pope Francis not call to congratulate Pres Trump? Why not?..he called Biden, and on other occasions too.
I don’t want to be negative. Lord forgive me.
Who cares if the Vatican is a state or a reclgious conclave of murmuring old MEN? We need to focus and renew our hopes for a saner world. I hope Trump will forge that new path , but his vial rhetoric and actions cause me pause. I may need help from God.
Cardinal Prolin: ““We wish him great wisdom, because this is the main VIRTUE of RULERS according to the Bible,” Note the word VIRTUE. Colossians 3:12 – “Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.” UNfortunatly, I saw none of this during Trump’s campaign or in his daily life. “VIRTUE”?
I still remain hopefull that November 5, 2024 will not be “a day that will live in infamy”. FDR
Colossians 3:12 – “Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.” Unfortunately, I saw none of this during Trump’s campaign or in
his daily life.”
To be fair, regular readers here have not witnessed any of those qualities in your hateful TDS posts either. Maybe people in glass houses shouldn’t throw stones.
So the countless acts of personal charity by Trump, to total strangers as well as friends, do not count as any sort of virtue in your applied understanding of scriptual admonishments? And is virtue better served by your propensities for insulting characterizations that seem to infect most of your commentary?
Enough with the hand-wringing; it’s unbecoming for a man.