Jett Foundation Assists Smith Family with Accessible Van Conversion

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Andrew Smith is your typical 21-year-old from Georgia. He loves spending time with his pets, a black cat named Miss Fluffles, and a guinea pig, Gizmo. He has lots of fish in his 50-gallon fish tank. He is a major history buff and has plans to further his education in the near future. Andrew is also living with Duchenne muscular dystrophy, but he doesn’t let that stop him from living life to the fullest.

However, life with Duchenne does not come without its daily challenges. Christina Smith, single mom to Andrew and his 25-year-old sister, Erica, shared with us how much harder it has become to safely transport Andrew in his power chair in the past few years:

“Andrew has been in a wheelchair for over ten years now. After his spinal fusion surgery five years ago, he is no longer able to be safely transferred from his chair to a regular car seat,” said Christina. “He needs to travel in his wheelchair for the comfort and support of his body to ensure his safety and reduce the risk of injury.”

An obstacle for many families impacted by Duchenne muscular dystrophy is the financial burden associated with critical, life-improving pieces of equipment, like the type of van the Smiths needed. Health insurance often won’t cover all specialized medical and accessibility equipment such as scooters, shower chairs, ramps, rotational medical beds, platform lifts, and accessible vans--items desperately needed when impacted by a progressive muscle-wasting disorder. 

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Enter Jett Foundation’s Jett Giving Fund. Jett Giving Fund is a matching gift program that helps to alleviate some of the financial burden that families face when purchasing accessible equipment. Andrew and his family participated in our 2019 program and after several months of fundraising and raising awareness, recently celebrated the arrival of their new van. The Smiths raised half the funds needed for their nearly $36,000 accessible van conversion through their fundraising page and through the generosity of FOCUS + Fragile Kids. Jett Foundation has matched the remaining 50 percent to cover the remaining cost of the modifications.

“This van will allow us to go to the doctor’s office, get to power wheelchair soccer practice and tournaments, GED classes, community events, church, and more,” said Christina. “There are so many things we can do now, the possibilities are endless. But, what we’re most looking forward to is the ability to visit family now, near and far.” 

Launched in 2017, Jett Giving Fund has helped transform the lives of countless families across the country with increased access to independence and safety. We need your help to support more families like the Smiths. To learn more about Jett Giving Fund or to become a sponsor, please visit https://www.jettfoundation.org/jett-giving-fund/.




Going the Extra Mile at the Rodman Ride for Kids

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Bicyclists from across the state joined Rodman for Kids for its 29th annual Rodman Ride for Kids this past Saturday. Despite being the second-to last day of summer, Southeastern Massachusetts quickly warmed up in the morning sunshine as cyclists took to the roads. 

This year was Jett Foundation’s second year of participation in the nation’s #1 one-day athletic fundraiser in support of at-risk youth. The fourteen Go! for Duchenne team members chose from 25-mile, 50-mile, or virtual rides in support of Jett Foundation’s programs and services for youth impacted by Duchenne muscular dystrophy and their families. 
“Jett Foundation is very near and dear to my heart. I started as a Gal for Cal and have slowly progressed into helping on other fundraisers,” said Erin Hoesly, lead fundraiser and Jett Foundation’s team captain for the ride. “My father's cousin had DMD when I was growing up, so I have been aware of this disease and the toll it takes on the boys and their families for a long time. The Quitzau family and their battle with Duchenne is what got me involved again. Their strength humbles me and motivates me to help raise funds to support all families fighting DMD. I wish there was more I could do. Riding 50 miles is the easy part.”  

The Ride serves as a catalyst by providing dozens of organizations with the opportunity to raise vital funds through this event. Rodman for Kids underwrites the entire event, ensuring that every dollar raised for its Affiliated Charities–like Jett Foundation–has the biggest impact possible. The Ride has raised over $143 million since its inception in 1991 by the late Don Rodman.

To date, the Go! for Duchenne Rodman Ride for Kids athletes have raised nearly $26,000 of their $35,000 goal. You can still support the team by visiting their fundraising page here through November 15. Thank you to all who have already supported, with special thanks extending to our team sponsors and major donors: Shea Concrete, Stys Hospitality, Rob Higgins, Ryan’s Hope for a Cure, CM&B, ProBed Medical, and Smith, Sullivan, and Brown, PC.

Jett Foundation Celebrates World Duchenne Awareness Day in Waltham, MA

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Jett Foundation hosted World Duchenne Awareness Day (WDAD) on Saturday, September 7 at the Embassy Suites Boston Waltham by Hilton. This year’s theme was “Stronger Than Duchenne.” From an inspiring speaker program to superhero themed activities in the kids’ room, strength and hope saturated the day’s events.  

“Our community has a strength and tenacity that is demonstrated over and over again. Despite challenges and obstacles, we continue to move forward together in our fight to cure Duchenne muscular dystrophy,” said Christine McSherry, founder and President of Jett Foundation. “That is why this year's awareness day theme is Stronger Than Duchenne. Together we are stronger than Duchenne and we are coming together to celebrate just that.”

Annie Ganot

Annie Ganot

In that spirit, Jett Foundation welcomed and cheered on the Gals for Cal athletes, as they prepared to race for Duchenne the next day in the Hopkinton Title 9 Triathlon. Gals for Cal athlete, Annie Ganot, shared her personal story as a mom, a “Gal”, and co-founder of Solid Biosciences.

“We are now 7 years post diagnosis and what has become vividly clear to Ilan and me is the importance of quality of life,” said Ganot. “Not only do we desperately need treatments to slow down the progression of this monster of a disease, we need to keep our sons in top physical condition, ensure our homes and transport are smooth and accessible and give our boys fulfilling experiences and opportunities. This is where Jett Foundation comes in and the importance of your contribution.” 

Ashley Kelliher

Ashley Kelliher

Guest speaker, Ashley Kelliher, shared her involvement with Jett Foundation in honor of her good friend, Cal Quitzau. Kelliher is a returning Gals for Cal athlete and recently finished her fourth JettRide, a cross-country cycling tour for teens to raise awareness and funds for Jett Foundation and Duchenne muscular dystrophy. She also served as a Camp Promise counselor this summer; Camp Promise, a program of Jett Foundation, offers children and young adults with select neuromuscular disorders a free, week-long camp experience at three locations across the country.

“Every year, Cal says Camp Promise is best week of his life,” said Kelliher. “I finally understood what he meant. Not the activities necessarily but its the fact that its one week for all of these boys to just be normal. When they go to camp they completely fit in. At camp, they don't have to worry about what others may think about them being in wheelchairs. For one week everyone just understands and is accepting of one another.”

Tracy Seckler

Tracy Seckler

Tracy Seckler, founder of Charley’s Fund, a Duchenne advocacy organization named for her son, also spoke at the celebration. Seckler has been a champion for the Duchenne Program at University of Massachusetts Medical. The clinic, spearheaded by founding director Dr. Brenda Wong, is dedicated to improving research and care outcomes for children and adults with Duchenne and Becker muscular dystrophies.

World Duchenne Awareness Day was free of cost for families affected by Duchenne, as well as healthcare providers and academics. The event was made possible by sponsors and community partners in the Duchenne space, including Catabasis, Italfarmaco, JB’s Keys to DMD, Mallinckrodt Pharmaceuticals, Pfizer, Inc., Santhera, Sarepta Therapeutics, Solid Biosciences, The Assistance Fund, and Wave Life Sciences.

Stronger Than Duchenne shirts are still available! Get yours here.





A Summer to Remember - Camp Promise 2019 Season Recap

Fun on the boat at Camp Promise-East!

Fun on the boat at Camp Promise-East!

September may seem like a quiet time in the camping world - camp has just ended, everyone is back to their day-to-day routines of school, work and home life. At Jett Foundation’s Camp Promise, we take September to catch up on (a little) sleep, but also look at the best parts of the summer and ways that we can make next season even better. 

Camp Promise 2019 was a transitional year: camp had a new leadership team, a new facility for Camp Promise-East, and more interest in camp than ever. Managing these changes in our program was our top priority and we will continue to look at ways to improve communication for the new year and to continue to work with our facility partners to offer the highest quality experience for our campers.

There are so many amazing moments that we had at camp - all the “firsts,” dances, s’mores, conversations, new friends and seeing old friends - it is hard to highlight just a few of our memories from camp. However, we are proud to say that: 

  • We accepted 100 campers this past summer - the largest number of campers accepted in camp’s history!

  • We served campers as young as 7 and as old as 48

  • Thirty-seven (37) of our campers were new to camp and more than 60 were returning campers.

  • We had the help of 146 volunteers at our three camps - with more than 55 percent being new to our camp family. 

  • We offered NEW activities at every camp including foam parties, an “out of this world” dance, Sasquatch hunting and the Dralla Block Party with adaptive cycling (and rock climbing at Camp Promise-East). We also were able to expand existing activities to all three camps such as Kangaroo court (a staple at Camp Promise-Rockies!) boating, fishing, and archery - to our other camps that did not have it before.

  • We had our largest medical teams at camp - we incorporated physical therapists, EMTs, doctors, respiratory therapists and nurses into our camp community, all of whom volunteered their time to be with us.

  • We incorporated new training techniques, including weekly training emails, for our volunteers to introduce them to personal care experiences they may have at camp.

We want to thank our volunteers SO much for joining us - all the amazing parts of camp are not possible without your commitment and dedication. Thank you to our donors–Sarepta, Biogen, Avexis, and Dralla–who help us make the magic of camp possible and to our many vendors who come out to offer new activities at camp.

Most of all, we want to thank our incredible campers - you make it really easy to come to work and put 100 percent into making camp a highlight of our summer. We hope you enjoyed it as much as we did.

Please consider helping us make next year even more terrific by donating to Camp Promise using the button below - every little bit helps!

Happy Fall,

Meghan, Kaitlin and Shannon

Gals for Cal Cross Triathlon Finish for 11th Annual Year

2019 Gals

2019 Gals

From athletes to spectators, the 11th Annual Gals for Cal triathlon–sponsored by JB’s Keys to DMD and Ryan’s Hope–was another inspiring, emotional experience for all involved. A group of extraordinary moms tackling Duchenne first hand–including Annie Ganot, Kristen McGourty, Lori Safford, and Lisa Shortlidge–once again rallied their supportive friends and family to make a huge difference in the lives of hundreds of families impacted by Duchenne muscular dystrophy. 

This year’s 42 Gals for Cal included not only friends and family of the team’s namesake, Cal, but also Gals for Eytani, Gals for David, Gals for Liam, Gals for Keelan, Gals for Ben, Gals for Sam, Gals for Jett, and Gals for all with Duchenne. Together, they have raised $45,000 so far and over $745,000 since the inception of the team in 2008. Gals all trained, fundraised, and challenged themselves in support of Jett Foundation programs that make a lasting difference in the lives of many impacted by this disease.

The Gals kicked off their weekend celebrating World Duchenne Awareness Day on September 7 in Waltham, MA. During the program, a special banner decorated by children and young adults in the community was presented to the Gals as thanks and encouragement for race day the following morning.

“We are now 7 years post diagnosis and what has become vividly clear to {my husband} Ilan and me is the importance of quality of life,” said longtime Gal, Annie Ganot, mom to Eytani. “Not only do we desperately need treatments to slow down the progression of this monster of a disease, we need to keep our sons in top physical condition, ensure our homes and transport are smooth and accessible and give our boys fulfilling experiences and opportunities. This is where Jett Foundation comes in and the importance of your contribution.” 

Gals for Cal was Jett Foundation’s very first Go! for Duchenne athletic fundraiser and has since inspired so many more teams to run, bike, swim, and even golf for Duchenne. We are so grateful for our Gal, Cindy Quitzau, and her group of friends whose vision and determination founded the Gals in 2008. Special thanks to Annie Ganot and her army of family and friends who continue to grow this team and continue Cindy’s legacy.

There is still time to support the Gals in reaching their $50,000 fundraising goal for 2019. Make a gift to your favorite Gal or the team here.To learn more about our upcoming Go! For Duchenne events, or to start one near you, please visit jettfoundation.org/goforduchenne.

Jett Giving Fund Assists Toms Family from Indiana with Accessible Van Conversion

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Jett Foundation recently assisted a family from Bloomington, Indiana with an accessible van conversion through its financial assistance program, Jett Giving Fund.

Noah Toms, a 13-year-old living with Duchenne, and his family, raised half the funds needed for their $28,265 van conversion through their First Giving Page and through the generosity of the Muscular Dystrophy Family Foundation. Jett Foundation matched the remaining 50 percent to convert the van for the family. 

The Toms family celebrated the accessible modification of their van with Jett Foundation and the Muscular Dystrophy Family Foundation on Monday, August 19, 2019 at their home. Staff from both Jett Foundation and the Muscular Dystrophy Family Foundation were present to share in the joy of the Toms Family’s newfound mobility.

“We are most looking forward to just being able to get out of the house more and having the ability to spend time together as a family. It will give us more independence,” said Shonda Toms, Noah’s mom. “I was not able to take Noah anywhere by myself; my husband would always have to come home and help me transfer him into our vehicle for appointments. Noah's disease has helped us to see what really matters in life and to appreciate what we have.”

Health insurance often won’t cover all specialized medical and accessibility equipment such as scooters, shower chairs, ramps, rotational medical beds, platform lifts, and accessible vans; items needed when suffering from a progressive muscle-wasting disorder. Without this equipment, those with Duchenne struggle to participate in the kinds of activities that most people take for granted, such as going to and from doctor’s appointments, navigating the hallways at school, and going to the mall with friends.

Launched in 2017, the fund has helped transform the lives of countless families across the country. To learn more about Jett Giving Fund or to become a donor or sponsor, please visit: https://www.jettfoundation.org/jett-giving-fund/.


Go! for Duchenne Team Conquers Iconic Falmouth Road Race

Some of our Go! for Duchenne Falmouth Road Race team members posing after crossing the finish line: (L-R) Peri, Tyler, Rachel, Karen, Brandon, and Kathryn.

Some of our Go! for Duchenne Falmouth Road Race team members posing after crossing the finish line: (L-R) Peri, Tyler, Rachel, Karen, Brandon, and Kathryn.

Congratulations to our Go! for Duchenne team on their demonstration of strength and endurance this past August 18th at the 2019 Falmouth Road Race. This was Jett Foundation’s first year participating in the race’s Numbers for Nonprofits program. Each athlete on the team raced and fundraised to support Jett Foundation’s work to empower families and fight Duchenne muscular dystrophy.

The Falmouth Road Race is a premier, annual 7.0-mile road race on Cape Cod from Woods Hole, a village in the town of Falmouth, Massachusetts, to Falmouth Heights. The race has long been known as one of the best non-marathon races in the country, bringing together both novice runners and elite athletes from all across the globe.

Race day began with an early morning fog, lifting just as many of our Go! for Duchenne runners hit their stride along the scenic seaside route. Typical of late August, the day was hot and steamy, but the atmosphere was refreshing. At the 6.0-mile mark–where our Jett Foundation cheering squad was stationed alongside the American Red Cross–the energy and excitement was palpable as the crowd cheered with each and every athlete passing by. The cheers grew even louder as each Go! for Duchenne athlete turned the corner and came into view, fueling spirits for the last–and hardest–mile toward the finish line.

Brandon Ensminger, Christine Kelly, Elizabeth Higgins, Karen Quitzau, Kathryn Tata, Olivia Collins, Peri Jacoubs, Rachel Levine, Sarah Bowler, and Tyler Diniz all pushed their limits by training, fundraising, and ultimately running the hilly race route. 

The team was rounded out by several virtual participants who worked hard to support Jett Foundation through fundraising efforts: Cindy Quitzau, Margie Heger, Mariella Collins, Richard Albertson, and Nick Jacoubs. Together the team has raised nearly $17,000 to help sustain and grow Jett Foundation programs and initiatives like Camp Promise, Jett Giving Fund, Family Workshops, advocacy efforts, and more. You can still support the team now through September 30th by donating here.

We would like to thank the Numbers for Nonprofits program and each of our runners and fundraisers for making Jett Foundation’s inaugural year at the race so successful. We look forward to next year’s Falmouth Road Race!

7 Ways to Celebrate World Duchenne Awareness Day 2019

World Duchenne Awareness Day (WDAD) is September 7 every year and it is recognized across the globe by cities, countries, and even the Pope! There are so many ways to get involved, wherever you live. We’re sharing just a few of those ways to inspire and kick start your own celebrations!

1. Join Jett Foundation at World Duchenne Awareness Day in Waltham, MA.
If you are in the Boston area, join us at World Duchenne Awareness Day in Cambridge. We're bringing together our Duchenne community for an inspiring speaking program and fun activities for the whole family! This year's celebration will be held at the Embassy Suites by Hilton, Waltham, MA from 11:30am to 1:30pm. Register by August 29th at https://www.jettfoundation.org/wdad/.

2. Start a Facebook fundraiser!
Raise awareness in your online community by starting a fundraiser for Jett Foundation on Facebook in honor of World Duchenne Awareness Day. Be sure to share why you are so passionate about fighting Duchenne; telling your personal story and who you are fighting for will help to inspire your friends and families to join you and support you.

3. Find out what WDAD events are happening around your town.
Head online to search for planned World Duchenne Awareness Day events nearby. You can find more information on events happening in several different countries at http://www.worldduchenneday.org/. You can also try search terms like “World Duchenne Awareness Day”,“Duchenne Muscular Dystrophy awareness,” and “WDAD 2018 events” to locate local events.

4. Donate to Jett Foundation.
Raise awareness for Duchenne on WDAD by paying it forward and sharing your gift on social media. Donations to Jett Foundation support transformational programming like Camp Promise, the Jett Giving Fund, Family Workshops, and more. Donate by visiting https://www.jettfoundation.org/donate-1/.

5. Decorate your home, car, or office red.
The color red is used for WDAD because red is the global color for stop. The whole Duchenne community is determined to STOP Duchenne in its tracks. Grab red balloons, red streamers, or try decorating and hanging Encourage your school or work place to wear red on Friday, September 6th.

6. Purchase a "Stronger than Duchenne" shirt to celebrate from anywhere! Buy your shirt here.
Don’t forget to share who you are strong for and why you celebrate. Tag Jett Foundation in photos wearing your shirt and use #WDAD19, #ImStrongFor, and #StrongerThanDuchenne on social media to share your story. Please order by August 10 to guarantee timely delivery within the US.

7. Read Dan and DMD in your classroom!
Bring a copy of Dan and DMD to school and have your teacher read it to the class on Friday, September 6. Check out this awesome reading guide courtesy of our pals at Fritz and Friends and share it with your teacher.

Thank you for celebrating with us; together we are stronger than Duchenne!