Hope in Focus Joins the Denise D’Ascenzo Walk to Fight Rare Diseases

Hope in Focus, a nonprofit 501(c)3 rare disease advocacy organization based in Ledyard, Connecticut, is partnering for the first time with the Denise D’Ascenzo Foundation Walk to Fight Rare Diseases taking place on Saturday, April 27 at 10:00am at Quinnipiac University in Hamden, Connecticut. To contribute to, or walk with Hope in Focus, visit https://runsignup.com/hopeinfocus.

The 2-mile walk kicks off at 10:00 a.m. The registration fee to join the walk is $30. Participants can register the day of the event, or in advance online. Participants may also join to walk virtually and JB Sports will mail a shirt and bib to them.

As a participant in this event, Hope in Focus will receive 50 percent of the registration fees and 85 percent of all additional fundraising from donors to help support its mission of outreach to the Leber congenital amaurosis (LCA) and rare inherited retinal disease community.

“We’re excited to join the Denise D’Ascenzo Foundation in raising awareness and funds for rare diseases. As a small organization supporting a rare community, it is challenging to reach our community, supporters, and to host events of this magnitude. This walk makes it possible for all of us representing rare diseases in Connecticut to band together, making it easier and fun to raise awareness of rare disease issues in general, while raising funds for our individual causes,” said Hope in Focus Director of Outreach and Development Courtney Coates.

“Today 95 percent of all rare diseases still lack an FDA-approved treatment and only one in two have a research or rare disease group to support them. It’s a tough journey for organizations like Hope in Focus and we are grateful to the Denise D’Ascenzo Foundation and JB Sports for creating this opportunity for us to come together. We welcome anyone who can join us, virtually or in-person, or with a contribution of any amount,” said Coates.

The event was established by the Denise D’Ascenzo Foundation, dedicated to supporting advances in medicine and health, promoting responsibility in the media, and assisting those facing physical and mental challenges, while encouraging openness, courage and kindness in all endeavors.

Hope in Focus founder Laura Manfre and her son Luca will participate in the event. Because the zebra symbolizes rare diseases, Luca will wear a zebra suit as he walks. Manfre’s daughter Sofia was diagnosed with LCA as a child and was the motivation for founding Hope in Focus. Today, the organization serves a global community of families and individuals living with this rare blinding disease through community outreach, education, and funding to advance treatments. Website to register or donate: https://runsignup.com/hopeinfocus

Hope in Focus Grateful for 2023 Dinner in the Dark Success

So much more than a typical fundraiser, the 8th Hope in Focus Dinner in the Dark we advertised as “a unique sensory experience,” gave guests just that and much more Saturday, Oct. 14, 2023, at the Mystic Marriott Hotel & Spa in Groton, Connecticut.

Dinner in the Dark afforded the opportunity for guests to experience their dinner in a different way – wearing blindfolds. For a short time it offers a small taste of what it might be like for someone dealing with a rare retinal disease. This key fundraising event supports our mission of “Seeing a cure for blindness,” as we advocate for people living with Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs).

Attendees sitting at table with their blindfolds on

Hope in Focus counted 273 attendees this year, with the event raising more than $200,000, a record amount for our annual fundraiser.

The evening is about bringing people together to connect with the mission of Hope in Focus, as we work to transform the lives of those living with blindness caused by LCA and raise funds to support research treatments.

Our hope for those treatments is becoming a reality through the half-million dollars we have raised throughout the years with the vital support from contributors and from people like those attending the dinner.

These essential dollars fund myriad retinal research studies here and abroad, and they ensure access to free genetic testing, a critical step toward finding retinal-disease treatments.

“Even as science advances, we still have only one treatment on the market today for just one form of LCA,” said Laura Manfre, Hope in Focus Co-founder and Board Chair. “We need to do better. We need to continue advancing the science, but also move the science from the lab and the clinic to the community waiting for treatments.

“It is with deep gratitude,” she said, “that we thank all the people who came out to support our efforts to improve the lives of people living with rare retinal disease and help advance research for treatments. We could not do this without you, and we are forever grateful for your contributions toward our mission.”

Courtney Coates, Director of Outreach and Development, shared with the guests Hope in Focus’ work in delivering updates and research progress in our newsletter, across social, in our Let’s Chat About webinar series, and at our 3rd LCA Family Conference this summer, when we welcomed LCA families from across the country, as well as Canada, Mexico, China, and Turkey. She also shared news about our then-upcoming hosting of an LCA Patient Listening Session with the Food and Drug Administration.

Our zebra, Luca Priebe, with Courtney Coates

“Tonight for a brief time, you will get a taste of what it might be like to live with vision loss, including some of the social challenges that accompany it,” Courtney said. “We hope this will move you to join our journey, as we continue our work to fund research to treat blindness caused by LCA and expand our advocacy activities.”

Courtney, our sole full-time Hope in Focus staff member, thanked each of our sponsors, and there were many. Click here for a complete list of our 2023 Dinner in the Dark sponsors.

She also thanked our Dinner in the Dark Committee members – without whom the event would not have been possible – for volunteering their countless hours behind the scenes.

Laura described for newcomers the origin of Hope in Focus and its mission. She founded the organization in 2014 with her husband, Charles Priebe, and close friend Elisse Rosen, having been brought into the rare retinal disease community by her daughter Sofia, who was diagnosed with LCA at age 2.

Heading into its 10^th year, Hope in Focus has grown into a global patient advocacy organization, supporting the LCA community and researchers seeking cures and therapies for rare inherited retinal diseases.

Laura introduced the evening’s key presenter, Dr. Daniel Chung, as a “rock star.” Dr. Chung is Chief Medical Officer for SparingVision, an ocular genomic medicine company. His work focuses on therapies to combat blinding diseases. He made a point of praising the courage of participants in clinical trials. These patients offer themselves to science, not knowing what the result may be, or if there will be any result at all.

“The real rock stars,” Dr. Chung said, “are those who say, ‘I’m going to be part of a clinical trial.’”

The final speaker before dinner was probably the most instructive. Sofia Priebe spoke via a video presentation to provide tips for a successful Dinner in the Dark experience.

Sofia advised on such techniques as determining which side of your knife is sharp, using utensils to gently explore the food on your plate, and remembering to always identify yourself and the person you’re speaking to in conversation at the table.

Now a junior at college, she spoke with the poise and grace of someone beyond her years. In her final tip, perhaps the most important, she advised: “Food to face, not face to food.”

Roger Nicholson, Executive Chef of the Mystic Marriott Hotel & Spa, prepared the dinner presented in four courses. To see the menu, please go to: https://old.hopeinfocus.org/whats-for-dinner/

Each course tasted delicious, and Sofia’s advice was put to good use as well, with one participant heard to exclaim, “It’s a square plate! Use the grid system!”

Image of two attendees holding up wine glasses.

Attendee Karen Clarke of Guilford said navigating a meal while blindfolded is challenging and humbling.

“The experience gives you a small glimpse into the challenges so many deal with every day. It’s a great motivation for us to help with research – and be thankful for our own sight when the blindfold comes off.”

Rosalie and John Maxham of Stonington attending Dinner in the Dark for the first time.

“We came away appreciating this organization devoted to helping find a cure for a disease we never knew existed, and we were very happy to lend our support to this zebra.”

The live auction, requiring no blindfolds, followed dinner, with Master of Ceremonies Mike O’Farrell auctioning up for bid items and experiences, a list of which can be found at: www.hopeinfocus.org/get-involved/dinner-in-the-dark/live-auction

After sweets for dessert, guests headed for the dancefloor for music by The Cartells.

We at Hope in Focus thank all the participants and faithful sponsors of Dinner in the Dark and look forward to an exciting event in 2024.

Sofia Sees Hope Scavenger Hunt

Welcome to the Sofia Sees Hope Scavenger Hunt! We are glad to meet you.

We are doing this to continue to raise awareness for rare inherited retinal disease and Leber congenital amaurosis, which is challenging during a global viral pandemic. We launched it last year because of the coronavirus crisis, when in-person fundraising went dark and we were unable to be with our family and friends in person. It was so fun that we are bringing it back this year, even as COVID restrictions are being lifted in many places. As always, we ask that you adhere to your local requirements, and practice social distancing and mask wearing where required or prudent.

Your entry fee will benefit Sofia Sees Hope, and the education, outreach and advocacy work we are engaged in. We will also make a donation from the entry fees to a 501(c)3 nonprofit of the winner’s choosing (up to $250)! This way you can help a charity in your community that is also doing important work.

Questions? Email us at info@sofiaseeshope.org

How it works

The Scavenger Hunt is open to anyone around the world! The maximum number you can have on your team is 5 (five) but they don’t all have to live in the same house! This could be a fun way to stay in touch with friends or family.

The only equipment you’ll need is a smart phone that can take photos/videos and a Facebook account.

To be officially entered, you must fill out this Google form. Once we receive your entry, you will be emailed confirmation and a link to make your suggested minimum team donation of $100. (Here’s the official rules, etc. you need to know.)

Sofia Sees Hope Scavenger Hunt poster info

The Scavenger Hunt runs from Friday, May 21 through Monday, May 31. On opening day, you will receive an email with the list of challenges. You must complete 10 (ten) of the challenges by 11:59 p.m. EST Monday, May 31 to be entered into the pool to win.

There will be 2 additional requirements in the game:

To begin, at least ONE member of each team must complete a quiz about rare disease. You will receive a link to the quiz in the confirmation email.
On the last day, Wednesday, May 20, at least ONE member of each team must share 3 facts about Leber congenital amaurosis or rare disease on their Facebook, Instagram or Twitter and tag Sofia Sees Hope (@sofiaseeshope on all platforms). It can be 3 facts included in 1 post, or 3 separate posts.

You will post all your photos and/or videos in this Facebook group as you complete challenges. Once you are confirmed as entered in the hunt, you will be invited to join the Facebook group. The group is private, meaning that no one outside it can see who is a member, or any of the posts.

And the winner is …

Every team that completes 10 challenges by the hunt’s end will be entered into a random drawing for the winner.

The winner will be able to designate a 501(c)3 nonprofit of his/her choosing to receive a donation from Sofia Sees Hope!

The winner will be announced Friday, June 4 in the Facebook group, on our public social media platforms, and notified by email.

Dinner in the Dark 2018 Live Auction

Dinner in the Dark‘s live auction is like no other! With charming master auctioneer Mike O’Farrell to guide you, our committee has gathered amazing experiences, travel, and more! Get your bidding arm in shape!

FROM KIM’S KITCHEN TO YOURS!

What’s better than receiving a little piece of Southern California on your doorstep once a month for a whole year? Kim’s creations have won multiple awards and each month she will send you a package valued between $35 and $45 of seasonal jams and treats that will have you waiting by the mailbox. From homemade blueberry or cherry jams to Cherry Garcia cookies and more, this is a gift that keeps on giving, all year long!

Details: Kim will mail a package to you anywhere in the continental U.S. One package per month, for 12 months. Pick up the first month’s gift tonight, or let us know and we will mail it to you.

Value: $500

Donors: Kim Christiansen

MORE MYSTIC MARRIOTT: DINNER, OVERNIGHT STAY AND THE RED DOOR

EXPERIENCE FOR TWO

Come back another night to enjoy dinner at the award-winning Octagon restaurant along with an overnight stay and a little pampering for you both at The Red Door Salon & Spa.

Details: Reservations are required by calling 860-326-0320. Non-transferable and non-extend able. Not valid for cash. Dinner not to exceed $200 value. Gratuity not included. May be redeemed Sunday through Friday nights, based on availability. Certain restrictions and additional blackout dates may apply. Must present certificate upon arrival.

Value: $550

Donor: Mystic Marriott, Octagon Restaurant, Red Door Spa

CRUISIN’ ON MAMIE, OUR FAVORITE LOBSTER YACHT

Your private cruise on board Mamie begins from the dock at scenic Mystic Seaport Museum. From there, the boat cruises down river to Noank and Fishers Island Sound. Once in the Sound, why not have a picnic lunch anchored off a secluded beach followed by a swim? Or, you could tie up alongside a restaurant and get a traditional New England lobster lunch followed by shoreside explorations. You choose the adventure.

The cruise is available to a group of six or fewer guests, and you get the whole boat to yourself for four hours. BYOB food and drink is encouraged! The boat provides a cooler with ice and water to keep drinks and food cold. They also have all the eating and drinking utensils you may need including bottle openers and wine coolers. Mamie has a below-deck area that includes a head (bathroom).

Details: Charters available June 1, 2019, through Columbus Day 2019 and may be booked directly with Mystic Seaport Museum. Dates and times based on availability.

Value: $600

Donor: Mystic Seaport Museum

“TEARDROP” BY JEFFREY P’AN

Bring home a little bit of Mystic and a little bit of Murano with this beautiful original piece created by American glass artist Jeffrey P’an. This 11-inch tall purple teardrop was created in 2018. The teardrop was created using a combination of traditional glassblowing techniques combined with Jeffrey’s modern twist. Jeffrey P’an studied in Murano, Italy, and founded Prescient Studios in 1994 upon his return to Mystic. Today, Jeffrey’s work can be found in all corners of the world, and Studio Jeffrey P’an is a design house, artist’s workshop, and factory in the tradition of the factories of Murano.

In addition to Jeffrey’s one-of-a-kind sculptural work, all manner of glass-related work is performed—from jewelry making, to cut crystal, to glassware and repairs of historical pieces by an expanded team of apprentices and specialists. The winner may take home this gift tonight, or Studio Jeffrey P’an will ship this piece free of charge to your home.

Value: $650

Donor: Jeffrey P’an

DIRECT FROM MIKE’S WINE CELLAR

Look what we took from Mike’s wine collection! Valued at more than $1,000, this package includes:

2012 Caymus Vineyards 40th Anniversary Cabernet Sauvignon ($240)
2009 Louis Roederer “Cristal” Brut Champagne ($200)
2012 La Castellana Super Tuscan Blend ($125)
2013 Williams Selyem “Bucher Vineyard” Russian River Valley Pinot Noir ($100)
2009 VinRoc Napa Valley Atlas Peak Cabernet Sauvignon ($90)
2010 Clos de L’Oratoire Saint – Emillion Grand Cru Classe ($75)
2003 Chateau Raymond – La Fon Sauternes ($65)
2012 Jordan Alexander Valley Cabernet Sauvignon ($55)
Moet & Chandon Imperial Brut Champagne ($42)
2004 Faustino I Gran Reserva Rioja ($40)
2007 La Rioja Alta Vina Ardanza Reserva Rioja ($30)
2011 Portia Ribera del duero Crianza Tempranillo ($28)
2013 Bourgone Passetoutgrain Cuvee Desite Burgundy ($18)

Details: Dirty old wheelbarrow and flashing police light not included.

Value: $1,100

Donor: Michael Mondello – Former SSH Director

SIMPLY MAJESTIC PRESENTS

This exquisite three-piece set from Simply Majestic’s Classic Designer series includes a sterling silver double circle pendant, matching hoop earrings and a cuff bracelet. The pieces are a woven style with simulated diamonds.

Details: This gift is donated exclusively to Sofia Sees Hope and no cash, credit or exchanges are permitted in the store.

Value: $1,100

Donor: Simply Majestic

MIXOLOGY WITH A MASTER

Party for six people

A unique educational opportunity to warm you this winter! Two-time James Beard Award winner and Master Mixologist Dale DeGroff, also known as King Cocktail, will come to your home and teach a party of six how to mix the perfect punch, eggnog, and a winter cocktail. Includes one of Dale’s books on mixology and a bottle of his aromatic bitters made in France. Dale is a Lifetime Achievement Award recipient from Food & Beverage magazine and the Founding President of the Museum of the American Cocktail. He is credited with re-inventing the bartending profession, setting off a cocktail revival that continues to flourish.

Details: Winner is responsible for purchasing liquor and providing food for guests. Mixology party dates are subject to availability between January 1, 2019, and December 1, 2019, and must be mutually agreed upon and confirmed at least six weeks in advance. Dale will travel just about anywhere in the world, but the winner is responsible for Dale’s travel and lodging expense beyond a 50-mile radius of the Mystic Marriott or Nassau, Long Island.

Value: $3000

Donor: Dale DeGroff, King of Cocktail

ESCAPE TO ANTIGUA

Seven nights for up to four people

Enjoy this getaway to Antigua in the British Virgin Islands, where crystal waters lap more than 360 white sand beaches and ocean breezes carry the scent of jasmine and hibiscus. This getaway is for up to four people in a beautifully decorated two-level waterfront villetta in Jolly Harbor. It’s an easy stroll from your home for the week to all the exceptional restaurants, nightlife, beaches, weekly sailing regattas and access to land and water sports.

The villetta is newly renovated and features two bedrooms, 1.5 baths, open floor plan on the main level with a fully equipped kitchen, and a large terra cotta patio overlooking the water and boat docks. Perfect for outdoor dining and watching the sunset.

Details: There is no expiration date on this gift and the winner may postpone travel until any year in the future. No blackout dates. Dates are based on availability.

Value: $2,400

Minimum bid: $2,000

PARK CITY, UTAH IN SNOW OR SUN (OR BOTH!)

Seven nights for up to seven guests

Park City lies east of Salt Lake City in Utah. Framed by the craggy Wasatch Range, it’s bordered by the Deer Valley Resort and the huge Park City Mountain Resort, both renowned for incredible skiing.

Stay in Park City Parks Edge, a new luxury three-bedroom, three-bath condo that sleeps up to seven guests! This 1,671-square-foot property features a top-floor large master bedroom suite with a king bed, a large private bathroom with stone shower, soaking tub, and dual vanities. It offers great mountain views and private decks overlooking the mountains and surrounding open space. Across the road is the community clubhouse with pool table, full kitchen for entertaining, a large outdoor hot tub, a community pool, a well-equipped workout room. It’s an easy drive to ski, hike, mountain bike, or stroll the historic downtown for shopping and dining!

Details: This is for a seven-day rental from Saturday to Saturday. The owner is flexible if other days are required. Blackout dates include December 24 to January 1. Expires June 1, 2020.

Value: $2,000 to $3,000+ based on season

Minimum bid: $2,000

CARIBBEAN VILLA IN MONTSERRAT

Seven nights for six guests

Montserrat is a small, tranquil island described as the “best-kept secret of the Caribbean.” Unwind in a villa with three king-sized bedrooms, a private outdoor pool, outdoor terrace with dining area overlooking the ocean. Located in Salem, Montserrat, the area is known for its black sand beaches, coral reefs, cliffs, and shoreline caves to explore. For the more adventurous, visit the Montserrat Volcano Observatory, schedule a guide (we recommend “Sunny”) to visit the restricted side of the island, or hike up into the mountains. For lunch, ask John for the best roti on the island—tell him Laura sent you. In town, you can enjoy local bars and restaurants, snorkeling, scuba diving, sailing, motor boats, and shopping.

Details: This package includes a seven-night, eight-day stay. Dates are subject to availability. Blackout dates include Thanksgiving, Christmas, and New Year holiday weeks. Travel must be booked within 12 months and traveled within 24 months.

Value: $4,300

Minimum bid: $3,500

UNDER THE TUSCAN SUN

Seven nights for four guests

Situated at the top of two ancient Tuscan hills are the Etruscan towns of Pitigliano and Manciano, both with breathtaking views in all directions. This package includes seven nights of accommodations for four people in Manciano or Pitigliano, Italy, located 1.5 hours north of Rome on the southern edge of Tuscany. You may choose from among more than six different villas. Wondering how much fun this is or need pointers on the area? Ask any of the four couples who won this before and gave rave reviews!

Details: There is no expiration date on this gift and the winner may postpone travel until any year in the future. No blackout dates. Dates are based on availability.

Value: $4,550

Minimum bid: $2,500

Love Golf? Hate Golf? Both Can Help Cure IRDs and LCA!

Birdies for Charity is a great program that we joined this year to help us raise awareness about Leber congenital amaurosis (LCA) and to help raise funds to cure LCA and other rare inherited retinal disease (IRD). For golfers, it’s a chance to be part of the Travelers Tournament, a decades-long tradition that brings the PGA tour’s top players to Connecticut. For non-golfers, it’s an easy, fun way to help Hope in Focus (formally Sofia Sees Hope) by m aking a pledge as low as two cents per birdie.

It’s very simple and works like a walk-a-thon. People pledge some amount per birdie, just like they might pledge some amount per mile walked in a disease walk-a-thon. In this case, they usually pledge anywhere from two cents to one dollar per birdie, because professional golfers are likely to make about 1800 birdies during the tournament.

This part is for the non-golfers! A birdie means they hit “one under par” for a given golf hole. Par is the number of strokes (times you hit a golf ball) a person is likely to need to get the ball in the hole. A professional is expected to do much, much better than the average golfer, so they would normally be under par most of the time, requiring fewer strokes than normal people would. So they make a lot of birdies!

For the real golfers and fans, we have a limited number of day passes available for people who pledge. First come, first served, so click here to go to our dedicated Birdies for Charity page now!