Month: April 2023

Categories
Wellbeing

The mum campaigning for rare disease awareness

PIP-UK is a charity, created by one determined mum, to help those suffering from a rare illness – Poland Syndrome.

“The charity started really out of the seed of inspiration and passion to make sure that no one was ever alone with the condition again because it’s rare, it’s very isolating,” explains Sam Fillingham.

Poland Syndrome is an incredibly uncommon syndrome – with the main symptom being an absent chest muscle on one side.

“For women, that experience means that they only develop one breast. So for women, it’s quite a difficult journey,” says Sam. “One of PIP-UK’s goals is to help support women who struggle with Poland Syndrome, and the mental toll and body dysmorphia that can come with it.” 

Other than a missing pectoral muscle, those who have the illness may have an underdeveloped rib cage on one side, or webbed fingers.

Because of how rare the syndrome is, it is so difficult to get a diagnosis – and it can be incredibly isolating. That’s what PIP-UK are fighting to change.

Sam’s son, George, was born in 2008 and when he was diagnosed with Poland Syndrome she was left confused, alone, and with little to no resources to turn to. She soon realised that there were other parents who were in the dark in the same way as her, and decided she had to help them.

“The NHS doesn’t even recognise it as a condition. It’s not in their data set, so everyone’s treatment path and path to diagnosis is really different – and pretty awful, for the most part.” 

In 2011, Sam set up PIP-UK. Initially, it was just a website and a phone number – somewhere people could turn to for comfort and support. Today, it is so much more than that – not only do they support people and families that have been affected by Poland Syndrome, they have the only database on Poland Syndrome, and are able to connect people in need with surgeons in the know.

“No one else has much information about Poland Syndrome, because it’s so rare – we have the only global database on Poland Syndrome, really, to start tracking the symptoms,” says Sam. “Then, from starting that database, we grew relationships with surgeons. We have the first clinic in the UK dedicated to Poland Syndrome at Birmingham Children’s Hospital, basically born out of the spark of talking to surgeons.”

Thanks to Sam’s tireless efforts, Poland Syndrome has grown into an incredible community that supports each other through thick and thin. 

“[Our] mission is to increase awareness, connect people and support people, and to one day be the centre of expertise for all of those things,” explains Sam. “Currently, we offer one-to-one support, wellbeing programmes and connection events.”

Poland Syndrome Awareness Day is on April 30th and is exactly what it says on the tin – a day all about PIP-UK’s mission to raise awareness of Poland Syndrome. They are recruiting for funds and volunteers, to help keep people informed, and give support and advice to people who are struggling.

“It has a massive effect on people. I think it’s just not been recognised and given that voice,” says Sam. “And I think the lack of research … is because there’s not going to be any drug that could fix this. So it’s never been an attractive proposition for anyone to research into.”

For Poland Syndrome, there is no defined treatment path – whether you are eager to look into surgery, or you are happy without. The most important thing, something that Sam and her volunteers at PIP-UK are aware of, is to find your community, find your support system, and make the best choices for yourself.

If you’re interested in helping to raise awareness of Poland Syndrome, or in volunteering with PIP-UK, you can find plenty of information and resources on their website.

Charity check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

PIP-UK. This is the only charity in the UK that supports people with Poland Syndrome and helps to put them in touch with healthcare professionals. Find out more and support them here.

Rare Disease UK. This is the national campaign for people with rare diseases and all who support them. Find out more here.

Beacon. Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. Support them here.

This article aligns with the UN SDG Good Health and Wellbeing.

Categories
Wellbeing

London Marathon announces 2024 charity

Samaritans, the UK and Ireland’s largest suicide prevention charity, have been announced as the 2024 TCS London Marathon Charity of the Year.

Amazing! Tell me more.

Samaritans is the only suicide prevention charity working across the UK and Ireland offering 24/7 support and last year, Samaritans volunteers spent almost one million hours answering calls for help.

The charity is hoping participants in the 2024 TCS London Marathon will join them and help raise £1.7 million, so more volunteers can support people to believe that a better tomorrow is possible.

To get involved, sign up to run the TCS London Marathon for Samaritans here on the Samaritans website. Alternatively, show up on the day and cheer on runners while wearing Samaritans green!

If you want to give back to the Samaritans before 2024, you can do so on the Samaritans website.

Charity check-in 

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

Campaign to End Loneliness. This charity campaigns to make sure that people most at risk of loneliness are reached and supported. Support them here.

Samaritans. Samaritans works to make sure there’s always someone there for anyone who needs someone. Find out more here.

R;pple Suicide Prevention. R;pple exists to ensure immediate mental health support is presented to individuals following a harmful online search. Learn more here.

This article aligns with the UN SDG Good Health and Wellbeing.

Categories
Wellbeing

‘Time For A Cuppa’ raises funds for dementia

A UK dementia charity is launching a vitally important fundraiser.

Tell me more.

Dementia UK, the specialist dementia nursing charity, is holding their 14th annual ‘Time For A Cuppa’ fundraiser from 1st-8th May 2023, to encourage supporters to get involved.

Among those supporting the charity’s largest annual event include stage actress, Jodie Steele – who is currently starring in Bonnie and Clyde at the London Garrick Theatre, and soap actress, Kate Spencer, who played the character of Grace Vickers on ITV soap Coronation Street.  

What is ‘Time For A Cuppa’?

Someone develops dementia every three minutes in the UK – that’s the time it takes to boil a kettle. So, between 1st-8th May, Dementia UK is encouraging people across the country to get together at home, at work, or in the local community to host a Time for a Cuppa event. 

Friends, families, and neighbours can come together to enjoy a cup of tea and a slice of cake in return for a donation to the charity. Every cuppa poured and penny raised will help the charity to grow the number of specialist dementia nurses so more families can access their support.   

Dementia UK’s dementia specialist nurses, known as Admiral Nurses, provide life-changing advice and support, to anyone affected by dementia. The money from this fundraiser will go towards paying more Admiral Nurses, to help as many people as possible.

If you want to support Dementia UK, you can sign up for your free Time for a Cuppa fundraising pack here, or donate on their website.

Charity check-in 

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

Dementia UK. This is a charity that provides Admiral Nurses for families affected by dementia, to help support those in need. Find out more here.

Alzheimer’s Research UK. Alzheimer’s Research UK are the UK’s leading Alzheimer’s research charity aiming to find a cure for dementia. Learn how to support them here.

Alzheimer’s Society. They are working towards a world without dementia, and are giving help to those living with dementia today, and providing hope for the future. Learn more here.

This article aligns with the UN SDG Good Health and Wellbeing.

Categories
Wellbeing

Kansas City: a transgender “sanctuary city”?

Recently, Missouri passed one of the most restrictive anti-trans bills in the United States, banning all gender-affirming care for minors and heavily restricting that same care for adults.

In response to this, The LGBTQ Commission has asked Kansas City, the second-largest city in Missouri to become a sanctuary city for the transgender community.

“There are several states, counties, and cities who have passed legislation codifying the right to receive and have access to gender-affirming care into law,” the commission said in a letter. “In the City of Kansas City, we must take every action at our disposal to be proactive, reduce harm, and ensure that Kansas Citians have access to life saving healthcare.” 

Councilwoman Andrea Bough said the city council is working on crafting a resolution that would protect Kansas City’s trans community. They’re trying to work within the law set forth by the attorney general’s guidelines which set the stakes in the first place.

“We can say to members of our community that we see you, we welcome you, and we will support you in every way that we can,” Bough said.

“We will not let those who seek to harm you come to our communities and step on our jurisdiction and impose their will on us to the highest extent of our capabilities and our laws.”

Charity check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

The National Center for Transgender Equality is the nation’s leading social justice advocacy organization winning life-saving change for transgender people. Support them here.

KID. They help support kids and families in crisis and with mental health support. Find out more. 

Save the Children. A humanitarian org that helps kids around the world. Support them here.

This article aligns with the UN SDG Partners of the Goals.

Categories
Planet Wellbeing

San Antonio trying cools streets with new pavement

City streets in the summer can be incredibly hot because of the way that pavement absorbs and holds heat. In places like the Arizona neighborhood of Dunbar Springs, people are working to help alleviate the heat through means like a community forest for shade. 

Now in San Antonio, Texas, the city is working to implement a new pavement that is a lot cooler to address the same issue.

The program called the Cool Pavement Pilot Program, will see the city testing different cool pavement products to see which ones are best at reflecting more sunlight and absorbing less heat. They will try 12 different products to alleviate the heat.

A big part of the program is equity concerns aiming to improve historically underrepresented communities.

“Which neighborhoods are impacted by heat the most? Which areas in San Antonio were the hottest, and which streets have the lower pavement conditions?” said Murray Myers, senior sustainability manager for the city.

The work is already underway and should help cool surrounding areas while ideally lowering energy prices as well.

“You have to use cool pavement, trees, green spaces, cool roofs. And in combination, we’re hoping to see great benefits for neighborhoods,” said Myers. “(What) we hope to see from this pilot is a difference of surface temperature of about 10 to 15 degrees.”

Charity check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

Beacon Food Forest. This is one of the largest food forests in the country. Find out more and support them here. 

Cultural Survival. They are an indigenous-led nonprofit focused on empowering indigenous Americans and helping the planet. Find out more. 

American Forest’s. A conservation organization focused on preserving and protecting American forests. Support them here.

This article aligns with the UN SDG Partners of the Goals.

Categories
Wellbeing

Alii Robinson’s TikTok brings health awareness to a rare disease

There are many diseases, disabilities, or disorders that get a lot of press just based on the sheer number of people affected by them. While it’s good to have this awareness, sometimes it leaves other disorders out to dry so to speak. One such disorder is Pierre Robin syndrome.

Pierre Robin sequence, also known as Pierre Robin syndrome or Pierre Robin malformation, is a rare congenital birth defect characterized by an underdeveloped jaw, backward displacement of the tongue, and upper airway obstruction. It causes problems with breathing and eating since the tongue can displace lower in the jaw. 

It affects 1 in 8,500 to 14,000 people. 

People with the syndrome may need a permanent tracheostomy to allow them to eat and speak. That’s the reality for Alii Robinson, known online as Little Silver Tube. 

Where some diseases have support groups and charities, Pierre Robin had none. Alii has Pierre Robin syndrome and had to make do on her own, trying to find the right treatment for her.

After noticing how little awareness there was about the disorder, she decided to start posting online, originally on a blog where she could share her experiences on. When she started posting on TikTok about things like how she cleans, wears and lives with her trachy she blew up almost overnight. 

In the first 6 months, she gained over 100,000 followers and at the time of writing she sits around 111,000 with two million likes.

“Last year, I needed to change my tracheostomy tube, so I did that and I videoed it to put it on my blog,” Alii tells Smiley News. “I video it on TikTok and I only had like five followers and I thought there’s no one’s going to see it, so it’s fine and then the next thing was it went viral.”

To her, the best thing about it so far has been connecting with others who have the disease and several have been in touch. They’ve shared how important her videos were to them, and Alii even helped one person source a manufacturer they were unaware of for their trachy. 

She’s also reaching people who have tracheostomies for different reasons and who find ways to be seen and heard through someone like Alii. 

“When I was younger, I didn’t know anybody that had the same condition as me. My mom didn’t know anybody that had any other children with a disability like I do,” Alii says. “So I think it’s just key for me to kind of let other people that have my condition that have a tracheotomy as well just know that things can be okay.

“I am being who I needed.”

Establishing a charity

One of her main goals now is to establish a charity for Pierre Robin syndrome so there’s a support system in place, something she didn’t have herself.

“So that there’s more awareness, there’s more support for people and for parents of children that have got my condition and just mainly to have that community and to know that you’re not alone,” she says. 

All in all, Alii just wants to be accepted and understood and wants people to feel the same way.

“I think it’s this day and age now where everybody’s so much more open to things,” she says. “It’s a perfect opportunity to say actually, ‘yeah, this is who I am and I don’t hate it anymore like I used to’.

“I’ve got my trachy but I don’t let it stop me, I still go out, I’ve got my good job like I have a good life and I just want to be other people to be able to see that and if they’re having a bad day they have a similar thing to me that could be like actually no, it’s fine like I am okay, we will get through it.”

This article aligns with the UN SDG Partners of the Goals.

Categories
Wellbeing

8-year-old’s Paris to London challenge for charity

An eight-year-old, who previously completed a 603-mile walk for charity has set herself another mission.

Tell me more.

Heidi Barker previously raised a whopping £16,500 for Alzheimer’s Research UK. This time, she has decided to cycle the distance from Paris to London to raise money for both Alzheimer’s Research UK as well as Macmillan Cancer Support.

“She cycles every day and then we plot off on a map where she is,” her dad, David, tells Smiley News. She started mid-April.

Heidi is hoping to raise £1,000 for each charity on the fundraiser. “And the main part is that we have fun along the way,” adds her dad.

What an inspiration!

Right? She’s not shy about fundraising. On the last fundraiser she did, Heidi cracked eggs on the heads of ex-footballers Robbie Fowler and John Barnes and also her teachers. “She ended up being invited to be in the Lord Mayors Parade and hundreds of thousands of people came to watch and it was live on BBC One,” said David.

How can I support?

Head to her JustGiving page here. At the time of writing, Heidi has raised nearly £700 out of her £2,000 goal.

You can also follow her on social media, on @fundraiserheidi.

Charity check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

Macmillan Cancer Support offers free, confidential support to people living with cancer and their loved ones. Find out more.

Alzheimer’s Research UK is the UK’s leading Alzheimer’s research charity aiming to find a cure for dementia. Support them here.

Cycling UK campaigns to make cycling safe and accessible for everyone. Find out more.

This article aligns with the UN SDG Good Health and Wellbeing.

Categories
Wellbeing

Choir ends loneliness in care homes

An African choir is helping to end loneliness in care homes.

Tell me more.

Dr Kayonda Hubert Ngamaba is a psychologist, pastor and refugee, and leader of Bolton’s Ephrata Community Church. 

Their church choir has started going into local care homes on a monthly basis, to help alleviate loneliness and bring joy to their residents.

Amazing!

The actions of this choir are making a huge difference to the lives of residents who may not get many visitors, and may struggle with feeling isolated and lonely. According to studies like this one from the University of Bedfordshire, this is quite common among adults in care homes.

By all reports, intervention from this choir has had an incredible effect on those living in the care homes! There has been joy, smiles, singing – and even dancing!

Stories like these are great examples of what we can do for our community, and how important it is to reach out and care for those on the periphery. If this story resonated with you, consider contacting your local care home and talking to them about if there is anything you can do to help.

Charity check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

Re-Engage. This is a charity that is making life less lonely for thousands of older people every year, through volunteer-led activities. Find out more.

Campaign to End Loneliness. This charity campaigns to make sure that people most at risk of loneliness are reached and supported. Support them here.

Marmalade Trust. This is a charity dedicated to raising awareness of loneliness and helping people make new friendships. Find out more and support them here.

This article aligns with the UN SDG Good Health and Wellbeing.

Categories
Equality

Drag performance helps support Girls Inc.

Across the United States, there are bills targeting drag performances and drag queens and kings, essentially removing the spectacle from public life in some states.

But in Massachusetts drag performers held an event to raise money for Girls Inc. 

‘Camilla’s Annual Extravaganza‘ was a sold-out drag event in Springfield, Mass. Every year Tony Isham, the organizer of the event, picks a different charity or nonprofit to support and this year was the girl empowerment organization, Girls Inc. 

“We do this event annually for different charities, this year we picked Girls Inc. because of the new program they are running with trans youth,” Tony said. “I am hoping to make a lot of money for Girls Inc. and I am hoping everybody has a great time.” 

Girls Inc. focuses on helping girls feel empowered and strengthened in the things they wanna do and has been doing it for nearly two centuries, starting in 1864.

“We focus on the development of the whole girl,” they share on their website. “She learns to value herself, take risks, and discover and develop her inherent strengths.”

They have mentorships, evidence-based programs, and even fight for legislation that puts the focus on empowering girls and women. 

“Girls Inc. girls live healthy and active lifestyles and are less likely to engage in risky behavior; they are eager to learn, successful in school, and more likely to graduate from post-secondary education; and they display diligence, perseverance and resilience,” they write.

Charity check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

J3 Foundation. They help kids in the Los Angeles area with early development. Find out more and support them here. 

KID. They help support kids and families in crisis and with mental health support. Find out more. 

Save the Children. A humanitarian org that helps kids around the world. Support them here.

This article aligns with the UN SDG Partners of the Goals.

Categories
Planet

UK rainforests restored by charities

Two of the UK’s own rainforests are set to be restored.

Sorry, the UK has rainforests?

That’s right! Temperate rainforests are sometimes known as Atlantic or Celtic rainforests, and occur in places with high exposure to the sea. They’re pretty rare, which is probably why when you hear the word ‘rainforest’ you think of somewhere like the Amazon.

Rainforests cover about 1% of Britain and have been heavily affected by development and deforestation, despite the fact that they are an incredibly rare and important habitat.

So what’s happening now?

The Wildlife Trusts charities will be developing and expanding rainforests on The Isle of Man and in Wales, thanks to a donation of £38 million from Aviva.

This is a huge win for all the incredible flora and fauna that exist within our rainforests, and will hopefully help them to thrive for years to come.

If you want to support the rainforest protection efforts in Britain, you can do so by getting involved with The Wildlife Trusts or donating on their website.

Charity check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.

The Climate Coalition. This is the UK’s largest group of people dedicated to action against climate change. Find out more and support them here.

Climate Reframe. Climate Reframe is committed to supporting the climate and environment movement in its transformation towards greater justice, equity, diversity and inclusion (JEDI). Find out more.

The Wildlife Trusts. These are a federation of 46 independent wildlife conservation charities covering the whole of the UK that help to manage nature reserves. Learn how to help them here.

This article aligns with the UN SDG Climate Action.