Archives April 2025

I giovani, forti di una profonda consapevolezza delle sfide globali, stanno assumendo un ruolo sempre più centrale nel promuovere soluzioni innovative e sostenibili. Come Project School promuoviamo ed incoraggiamo il loro impegno, offrendo loro gli strumenti e le opportunità necessarie per realizzare le loro idee.

All’interno del progetto europeo Glokers, dedicato a potenziare le capacità dei giovani nell’affrontare le sfide della sostenibilità ambientale, si è svolto a luglio un interessante e stimolante meeting ad Amarante (Portogallo) presso la Casa de Juventude. Sono stati organizzati dei workshop su temi chiave della sostenibilità ambientale e sociale volti a fornire ai partner e ai giovani partecipanti le conoscenze, le competenze e gli strumenti necessari per diventare attori attivi del cambiamento. 

Green Deal Europeo:

Grazie alla collaborazione con Roberta Bonacossa, Social Impact Manager e Presidente di Change For Planet, i giovani partecipanti hanno potuto immergersi nel cuore delle politiche europee per la sostenibilità. Il Green Deal Europeo, un ambizioso piano di investimenti per un’Europa più verde e digitale, è stato al centro delle discussioni. I partecipanti hanno scoperto come questo piano possa rappresentare un’opportunità unica per creare nuovi posti di lavoro, migliorare la qualità dell’aria e proteggere la biodiversità.

Spreco alimentare:

In collaborazione con RECUP, un’associazione in prima linea nella lotta allo spreco alimentare, i giovani hanno scoperto l’allarmante realtà di uno spreco alimentare globale che raggiunge circa 1,3 miliardi di tonnellate all’anno. Hanno approfondito le cause di questo fenomeno, dalla produzione alla distribuzione, fino al consumo domestico, e ne hanno compreso le gravi conseguenze ambientali, economiche e sociali. I partecipanti hanno compreso come lo spreco alimentare contribuisca al cambiamento climatico, alla perdita di biodiversità e allo spreco di risorse preziose come acqua e suolo. Inoltre, hanno scoperto che lo spreco alimentare ha un impatto significativo sulla sicurezza alimentare, in un mondo in cui milioni di persone soffrono la fame.

Cucina vegetariana:

Un’esperienza pratica presso il ristorante Cor de Tangerina, situato nel cuore di Guimarães, alla scoperta dei sapori e dei valori della cucina vegetale. Nato dalla passione per la cucina naturale e dalla volontà di offrire un’alternativa gustosa e sostenibile, questo locale si è rapidamente affermato come un punto di riferimento per gli amanti del cibo vegetariano in Portogallo. Il nome stesso, “Cor de Tangerina” (Colore Mandarino), evoca l’energia, la vitalità e la dolcezza degli agrumi, simboli di freschezza e positività. Il ristorante si impegna attivamente a ridurre il proprio impatto ambientale. Il ristorante utilizza esclusivamente prodotti biologici e a km zero, collabora con produttori locali e promuove la riduzione degli sprechi alimentari. Durante il workshop, i partecipanti hanno avuto l’opportunità di conoscere da vicino la filosofia del ristorante e di scoprire i segreti di una cucina vegetale creativa e nutriente. Sotto la guida degli chef esperti, hanno imparato a preparare piatti deliziosi e salutari, utilizzando ingredienti freschi e di stagione, provenienti per lo più da produttori locali.

L’esperienza vissuta durante questo meeting ha unito formazione, team building e contatto con la natura e ha rappresentato un’opportunità unica per i partecipanti di uscire dalla propria comfort zone e mettersi alla prova in un contesto multiculturale ed europeo, capace di promuovere l’integrazione e l’internazionalizzazione. Attraverso sfide comuni, i giovani hanno sviluppato competenze trasversali fondamentali per il successo personale e professionale, come la capacità di lavorare in team, la resilienza, la leadership e la comunicazione efficace che verranno rafforzate nella prossima Pilot School in Polonia a gennaio. Un’occasione di capacity building e di co-progettazione di iniziative dei giovani per rispondere alle sfide della sostenibilità e del cambiamento climatico, che renderà le nuove generazioni protagoniste del cambiamento. 

“We are not a product of what has happened to us. We have the power of choice.”
― Stephen Covey, Author 

“When your biggest fear is FTD, it makes you quite fearless to everything else.”
― Spencer Cline, AFTD Ambassador 

A packed Ziegfeld Ballroom in New York City took in a firsthand account of the experience of genetic FTD on April 3, as AFTD Ambassador Spencer Cline delivered the keynote address at the ninth annual AFTD Hope Rising Benefit.  

Cline shared details of his family’s journey through his father’s illness, and his own journey across the country by bicycle in tribute. His resilience and generosity of spirit brought many to tears.   

Cline, whose father Lawrence died in 2012, spoke from the heart about his extended family’s experience with the disorder—his three uncles also had genetically linked ALS/FTD—as well as the specter of his own prospects for a diagnosis and the impact that would have on his own family.  

The bike ride was conceived as a way for Cline to honor his late father, raise money for the FTD community, and build awareness. He raised over $50,000 on his ride, along with untold amounts of FTD awareness.  

Cline drew parallels between his ride and the journey that is an FTD diagnosis. His transcontinental setbacks included many flat tires, a broken wrist in one spill and, just 300 miles shy of his goal, another accident that ended his trip. His network of supporters stepped up and finished the ride for him, allowing him to claim a broader victory.

“Having a loved one with FTD is impossible to get through alone; it takes a community of support rallying around you lifting you up when you can’t keep going,” he observed. 

Watch the keynote address here. 

A study published in the journal The Lancet Neurology evaluates the efficacy of the hormone oxytocin as a treatment for apathy, a common symptom of FTD disorders.

Co-authors of the study include AFTD Medical Advisory Council (MAC) chair-elect Chiadi Onyike, MD; current MAC members Adam Boxer, MD, Howard Feldman, MD, and Carmela Tartaglia, MD; emeritus MAC chair Mario Mendez, MD, PhD; emeritus MAC member Edward Huey, MD; and AFTD grant recipient Simon Ducharme, MD.

No Treatments Exist for Apathy as a Symptom

Apathy is a common symptom of FTD disorders, especially behavioral variant FTD (bvFTD). Caused by degeneration of the region of the frontal lobe – the part of the brain associated with initiation, planning, and motivation – apathy can best be understood as a decline in goal-oriented behavior. Because it can cause people to uncharacteristically lose interest in relationships, hobbies, and interests, apathy is one of the more distressing symptoms of FTD for families and care partners.

“Symptomatic treatment in frontotemporal dementia is a field that needs more study,” lead author Kristy Coleman, MSc, told Education News Canada. “Unfortunately, there isn’t much out there in terms of evidence-based symptom management for any FTD symptoms, including apathy.”

Coleman’s team investigated if an artificially administered form of the hormone oxytocin could provide relief from apathy in FTD. Oxytocin plays an essential role in building relationships and is sometimes referred to as the “love hormone.” In pilot studies of people with FTD, a single dose or one-week course of oxytocin improved behavior and apathy-related symptoms.

The authors organized FOXY: A Phase 2 Clinical Trial of Intranasal Oxytocin for Frontotemporal Dementia to evaluate if oxytocin delivered through a nasal inhaler could provide safe and tolerable relief for apathy. The study involved 74 participants from 11 trial sites in the United States and Canada who took part in one of two stages; stage one was intended to determine a dosing schedule, while stage two allowed researchers to collect data to determine the efficacy of the treatment.

The measures used were the same in both stages, with researchers hoping the data would show an improvement in participants who took oxytocin compared to those who took a placebo. The authors used the apathy section of a behavioral screening tool called the Neuropsychiatric Inventory (NPI) to evaluate whether apathy improved. The NPI evaluates behavioral changes in people with dementia across several domains, including apathy, through a clinician interview with a care partner who spends a significant amount of time with a person with dementia. Care partners were asked to conduct dosing using nasal spray provided by the study’s authors.

Oxytocin Provides Small Improvement in Apathy

Participants in stage one were assigned to one of three cohorts, which were further divided into placebo and oxytocin groups; one cohort received a dose each day, another was dosed every other day, and the final cohort was dosed every third day. After receiving either a placebo or oxytocin dose, a cohort would receive the other option for the next round of dosing, before alternating back to the original option for the final round.

The scientists recorded a small but potentially clinically meaningful improvement in apathy, represented by a 1.32-point improvement in NPI scores (a score of 2 or above was required to qualify for the study). The authors underscore that this reflects an improvement in apathy noticed by care partners in their daily interactions with their loved one. Additionally, reductions in apathy were not associated with a worsening in other symptoms.

“It is a robust effect, but it is in the range of mild improvement. It’s not night and day, but enough that it was detectable by the care partners,” said co-author Elizabeth Finger, MD. “This is an exciting step forward in having specific treatments for neuropsychiatric symptoms of FTD.”

Certain subgroups within the study experienced more pronounced improvements. People with bvFTD, men, younger people, and those with certain genetic traits benefited more from oxytocin doses than others. Care partners reported little difficulty administering the oxytocin, and the treatment was safe and well tolerated by participants. While further research is needed to tackle new questions raised by the study and to address its limitations, the results identified a potential treatment for a troubling symptom of FTD that currently has none.

“Even small things like this make a huge difference,” said Coleman. “If you’re in a marriage with somebody who maybe doesn’t display interest in you or your well-being, to have those little glimmers is significant.”

To learn more about apathy, read the winter 2018 edition of AFTD’s Partners in FTD Care about apathy, or watch the apathy session from AFTD’s 2021 Education Conference on YouTube.

Do you need help addressing apathy for yourself or a loved one living with FTD? AFTD’s HelpLine understands what FTD is like and can provide the support you need; contact the HelpLine at 1-866-507-7222 or [email protected].

AFTD is deeply concerned about staff cuts and funding disruptions at the U.S. Department of Health and Human Services (HHS), and the potential impact they will have on dementia-focused research and programs across the agency.

In partnership with other advocacy organizations, AFTD has been communicating with policymakers about the importance of these programs for people with FTD and their caregivers, as well as the progress being made in FTD research. Our collaboration with other advocacy groups helps to amplify our voice and maximize our impact on policy decisions and legislation affecting our community.

For instance, AFTD is a member of the Ad Hoc Group for Medical Research, a coalition of nearly 400 patient and voluntary health groups, medical and scientific societies, academic and research organizations, and industry. Its mission is to enhance federal investment in biomedical, behavioral, social, and population-based research by increasing funding for the National Institutes of Health (NIH).

Recently, AFTD and 509 organizations from the coalition signed a letter to Congress advocating for increased NIH funding for fiscal year 2026, which begins October 1. Specifically, the letter requests that Congress appropriate at least $51.303 billion, which would allow the agency’s budget to keep pace with inflation and promote meaningful growth of approximately six percent. As Congress begins appropriations negotiations in earnest this spring, AFTD plans to meet with key members to advocate for NIH funding and other programs vital to people with FTD and their families.

If you have not done so already, we encourage you to become an AFTD advocate by sending an email to your members of Congress asking them to support increased NIH funding. You can also see other causes that AFTD supports by viewing a list of advocacy letters that AFTD has signed onto.

Top row, L-R: Hope Rising MC Paula Zahn, Hope Rising Benefit Co-Chairs Joan Berlin and Anna Wintour, AFTD Ambassador Spencer Cline, Ariana DeBose, New York State Senator Michelle Hinchey

Bottom row, L-R: AFTD CEO Susan L-J Dickinson, Hope Rising Benefit Co-Chair David Zaslav, AFTD Board members Donald Newhouse and Kathy Newhouse Mele

AFTD’s ninth annual Hope Rising Benefit, held April 3 at the Ziegfeld Ballroom in New York City, raised over $1.9 million to support AFTD’s mission and pave the path forward to greater awareness, effective care, and research into urgently needed treatments for FTD.

The event’s Keynote Speech was delivered by Spencer Cline, an AFTD Ambassador whose father, Lawrence, had FTD and died in 2012. Last summer, he honored his late father and raised funds for AFTD’s mission by biking across the entire United States, from Oregon to South Carolina.

In a speech that Vogue described as “deeply moving,” Spencer recounted his two-month ride, including the broken collarbone he suffered in Georgia, with just about 300 miles to go. Since the injury prevented Spencer from biking the last stretch himself, the AFTD community made up the remaining miles by riding in their own communities on his behalf.

“While it was not the finish I ever imagined, it was almost more beautiful, and it sums up what AFTD is all about,” he said at Hope Rising. “Having a loved one with FTD is impossible to get through alone. It takes a community of support rallying around you, lifting you up when you can’t keep going.”

ABC’s Person of the Week

On Friday, Spencer was named ABC World News Tonight’s “Person of the Week.” A segment devoted to his family’s FTD journey highlighted his cross-country bike ride and included footage from Hope Rising the night before.

“My hope is that one day, with everyone’s help, we’ll find a cure in my lifetime, and that no child will have to lose a parent to FTD,” Spencer told anchor David Muir.

Spencer is continuing to honor his father by accepting donations to support AFTD’s mission.

Continuing a Hope Rising Tradition

Journalist Paula Zahn reprised her annual role as Hope Rising’s master of ceremonies, while Academy Award–winning actress Ariana DeBose provided the evening’s musical entertainment. Over the weekend, Ms. DeBose described her participation in Hope Rising as a “privilege.”

As in previous years, AFTD Board member Donald Newhouse served as Benefit chair, along with co-chairs Anna Wintour (editor-in-chief, Vogue) and David Zaslav (CEO and president, Warner Bros. Discovery). AFTD Board member Kathy Newhouse Mele and Joan Berlin served as vice chairs.

Ms. DeBose continued a Hope Rising tradition by performing the Eddie Cantor classic “If You Knew Susie” in honor of his late wife, Susan Newhouse. Microphone in hand, she walked through the crowd and traded lines of the song with Mr. Newhouse. It was just one of many highlights in this special, hope-filled evening.

An Honor Deferred

Emma Heming Willis and Bruce Willis were scheduled to be honored with the Susan Newhouse & Si Newhouse Award of Hope. Emma was going to attend and accept the award on their behalf, but unfortunately could not make it in person due to the Los Angeles wildfires earlier this year. Mrs. Willis did address the 400-plus guests in attendance with a video message.

They will be honored at the next Hope Rising Benefit, scheduled for March 12, 2026.

The Susan Newhouse & Si Newhouse Award of Hope is named for Mr. Newhouse’s late wife and brother, both of whom had FTD.

Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Scottsdale, AZ, hosted by AFTD volunteer Lora Johnson, on May 10, 2025. You don’t have to face FTD alone. These events will offer an opportunity to spend time getting to know one another, learn about AFTD events, programs, and resources, and discover how to get involved.

We encourage you to download this flyer and share it with anyone who could benefit from this unique opportunity!

RSVP by contacting Lora at Loraj626 at gmail.com or 602-695-0095.

Join and learn from others who understand the FTD journey at this virtual, regional AFTD Meet & Greet event for parents whose spouses are diagnosed with FTD in Idaho, Oregon, and Washington, hosted by AFTD volunteer Julie Motschenbacher, on April 28, 2025. This Meet & Greet will provide an opportunity to talk with others who understand what you are going through, and to connect with resources and support for your journey.

RSVP by emailing Julie at m13family at gmail.com; the Zoom link will be emailed to you afterward. We encourage you to download this flyer and share it with anyone who could benefit from this unique opportunity!