Announcing Jettride 2010

February 25th, 2010

The Jett Foundation is very proud and excited to announce that we are hosting another Jettride!!! JettRide 2010 will kick off on June 24 in San Francisco, CA where riders will begin their journey by dipping their tires in the Pacific Ocean. It will end on Aug 27 in Point Pleasant, NJ where the riders will mark the conclusion of their 3700 mile journey by dipping their tires in the Atlantic Ocean.

The Jett Foundation is now accepting application for young riders who have a personal connection with the DMD community, as well as sponsors and supporters to continue this grass roots fundraising project across America. Our goal is to unite families and communities across the country to raise awareness and funds to help all those suffering from this devastating disease.

Imagine how inspiring it would be to ride for those who can’t! Jettride 2010 is a follow up to the 2007 Jettride in which 24 young people cycled across the country to raise awareness for Duchenne and to benefit the Jett Foundation.  The Jettriders from 2007 (one of them being Jett’s sister Jordan McSherry) would tell you how inspiring and life changing the experience was.  The ride will be limited to 30 participants and riders are required to raise $4,000 to participate in the event.  The riders will travel through 13 states and stop at over 30 cities logging over 3700 miles in 9 weeks.

The ride will be organized by a newly formed professional cycling company, BIKEternity.  BIKEternity uses bicycling activities to teach young adults ages 11-20 life skills, gives them an appreciation for diversity and promotes environmental awareness through long-distance cycling.  Arlen Hall, BIKEternity co-founder led the Jettride in 2007 and is very excited and eager to recruit another group of young riders in hopes of giving them an inspiring and life changing experience.

For more info on BIKEternity visit www.BIKEternity.org.

For information on Jettride 2010 and how you can get involved with this inspiring journey visit www.jettride.org

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Nick Larkin is a Channel 5 A+ Student

February 23rd, 2010
Nick Larkin with his mom Lauren Ferrari and Assistant Principal Connie Varoudakis

Nick Larkin with his mom Lauren Ferrari and Assistant Principal Connie Varoudakis

Nick Larkin is an 18 year old High School student from Danvers, MA. He is a typical high school senior; he has tons of friends and looks forward to graduating with them this June. The only difference between Nick and his friends, however, is that Nick has a form of muscular dystrophy; Duchenne (DMD). DMD is the most common fatal genetic disorder diagnosed during childhood today. It is a progressive neuromuscular disorder that affects mostly boys, and causes the loss of muscle function and independence. At 18 years old, Nick is wheelchair bound. Despite his disorder, Nick maintains a positive attitude and is an inspiration to all who know him.

Nick was recently nominated as a channel five A+ student by Danvers High School’s assistant Principal Connie Varoudakis. This channel 5 segment profiles high school students who, despite adverse circumstances have excelled academically. Channel 5 news recently came to Nick’s high school and followed him around to see what a typical day at school is like for this brave 18 year old. You can watch his segment on thebostonchannel.com website here: http://tinyurl.com/ya5w5yv

Nick is featured in our Documentary “10th Gear JettRide: 3800 Miles to a Cure”. In the documentary we hear first hand from Nick how he feels about his disorder, and the daily struggles he and his family face. He explains the first time he realized the extend of his disorder, and how he has since learned to accept it, and continue living with a positive attitude. This film, although heartbreaking at times, is truly inspirational, and has touched all who have seen it. The Jett Foundation will be hosting a showing of this inspiring film at Danvers High School on March 10, 2010, at 9:15am for Nick and his entire senior class.

watch the trailer here: http://tinyurl.com/yeg2c8x

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A Star Studded Affair

February 13th, 2010

It was a star studded affair on Friday night February 5th at the Jones River Trading Company in Kingston, MA. Christine McSherry, Founder of the Jett Foundation (local nonprofit whose mission is to fund research and treatments for boys living with Muscular Dystrophy) hosted a movie premiere of Anthony Geathers’ Documentary “10th Gear JettRide: 3,800 miles to a Cure”. Among the stars were Jordan McSherry (17) (Christine’s daughter) who is featured in the film as she and 25 other teens rode their bikes from Oregon to Massachusetts in hopes to raise money and awareness for boys like her brother, Jett McSherry, who have Duchenne Muscular Dystrophy (DMD). Arlen Hall, who led this group of riders was in attendance as well as Caroline Claflin (16) & Megan Budak (16) who also participated in the ride and the film. The JettRide documentary has won several film festival awards and continues to be an important tool to spread the word about the devastating disorder of Duchenne Muscular Dystrophy.

Christine McSherry acknowledged a special guest and supporter, Quin Sullivan of Sullivan Brothers Auto Mall, who was a lead sponsor of the 2007 JettRide and who announced he would once again sponsor the 2010 JettRide. The 2010 JettRide will begin this June in San Francisco. Bicyclists will peddle all the way to New Jersey in hopes of linking families and communities across the country who are affected by DMD.

Special thanks to all those who attended Fridays premiere! We hope you were moved by this inspiring film. Thanks to the support of so many, we are able to continue our efforts to raise awareness and find appropriate treatments for boys battling DMD.

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Harvard Medical Student Forum Update

February 8th, 2010

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About six families affected by B/DMD attended yesterday’s informal meeting with Harvard medical students; Living with Chronic Conditions. There was a broad age range of boys/young men represented, from 2 years old all the way to 46 years old!!

Discussion topics included;
- How diagnosis of a chronic, potentially life limiting disorder should be given

- The many actions that parents often take when faced with a devastating disorder, including non-traditional therapies

- How physicians should put into perspective the needs of parents – and how they often differ from the needs of the actual child/patient

- The urgency to craft medical students into a neuromuscular practice interest

- Emphasis on seeing those with chronic conditions as individuals and how clinicians often lump patients by diagnosis “the DMD boy v. the boy diagnosed with DMD”

- Assisting families and patients through the diagnosis, respecting the parents insight and knowledge

- Understanding that this disorder affects the entire family and their dynamics, for example – a DMD diagnosis affects where a family lives, financial responsibilities, vacations, education, health insurance, transportation, relationships, siblings, extended family, holidays, housing, sports/recreation – when DMD affects a family, it affects everything in that family

- Could programs that include the ENTIRE family serve a role? For example, a CAMP where families (including siblings) go for 4-5 days? Parents have support of other parents and perhaps some therapeutic assistance, siblings get to bond and hang out with other siblings who have a brother/sister that has a muscular dystrophy – there are several camps for families affected by cancer – great feedback and results

- Vocation ideas for affected young men

- Different ways that families tell their son(s) about their diagnosis, how doctors can help parents through this difficult time

Thank you for taking the time to educate and ignite these future doctors with some very important messages!

See you all again soon,

Christine

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Comments from Dr. Brian on the Harvard Forum – DMD Feb. 4, 2010

February 8th, 2010
Dr. Brian with Harvard Medical students.

Dr. Brian with Harvard Medical students.

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Young men with DMD at the forum

“Hello Families!

Thanks for coming to yesterdays forum on DMD – The impact
and feedback I heard from the students was over the top!

The session for these young superstar Harvard Medical Students was
fantastic and sure to be memorable! We want to be on their radar
screen forever!

I so appreciate the time and effort of your coming into Boston to
teach these top student doctors about the courage and challenges your
family faces EVERYDAY with DMD!

Our young men were awesome and no one in that room will forget what you said!
THANK YOU! Your courage is AMAZING!

Fondly, Dr. Brian”

P.S. Wanted to relay wise advice from the real DMD expert Gordon
Sterling (46 year old with DMD) who told me he wanted to encourage all parents to;

“Stop thinking about the END ; instead focus on the now and the MIDDLE!”

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Lights…Camera…CURE

February 5th, 2010

1689345830_51943c1470_t On February 5, 2010 the Jett Foundation is rolling out its red carpet for the movie premiere of the documentary “10th Gear Jettride – 3800 Miles to a Cure”. This film follows the 2007 Jettriders on their inspiring and eye opening journey across the country to raise awareness for Duchenne Muscular Dystrophy (DMD). The film features and is narrated by Jordan McSherry, who is the 14 year old sister of 12 year old Jett McSherry. Jett was diagnosed with DMD at the age of 5. Jordan takes the viewers on the journey both by bike; for 3800 miles – and as a sister who is trying to change the outcome of this life-limiting disorder that will ultimately take the life of her younger brother. The film visits with several families and explores the many different dynamics of how a family can be changed by the diagnosis, including insight to Jordan’s own family and reactions to Jett’s diagnosis. It also explores the many challenges faced by young men with DMD paralleled by those youths riding for individuals diagnosed with Duchenne. An amazing too prolonged story that educates and inspires the viewer – both exciting and sad at times, but clearly a tool that will raise worldwide understanding for this devastating neuromuscular disorder and inspire others to challenge themselves to help change the outcome of Duchenne.

click here to see trailer -http://tinyurl.com/yjj77nt

And for those coming this evening – see you there!!!!!!!

Christine

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the The Harvard Medical Student DMD/BMD Forum

February 2nd, 2010

We would like to invite you to the Harvard Medical Student DMD/BMD forum.
Date & Time: Thursday, February 4th from 3:30pm to 5:30pm
Location: Minot Room in the Countway library building – Longwood Medical Area at 10 Shattuck St. Boston, MA 02115.

Please see website for directions

https://www.countway.harvard.edu/menuNavigation/aboutCountway/directions.html
FYI – tea/cookies will be served

Those of you who joined us last year, thank you and we hope you will join us again. The group Harvard Medical Student
program More to Life than Genes (MTLTG) has been changed in title to
Living with Chronic Conditions and we are invited to share our DMD/BMD world!

Our families and young men living with duchenne/becker dystrophies made such an impact last year, the Harvard medical
students invited us back for this year! Typically they do not invite
the same groups back on consecutive years. Format different so won’t be lunch but an
afternoon tea/cookie with big group session and small group sessions.
Hope to get 10-12 families and/or young men living with DMD/BMD. Last year NPR came to cover the
event and got some airwaves with WBUR.

Please RSVP to Laurie Bliss @ PedsNM@partners.org by Monday, Feb 1st.

For parking please contact Emily Asaro Morell @ Emily_Morell@hms.harvard.edu

Please pass the word around!

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Happy Thanksgiving!

November 26th, 2009

Happy Thanksgiving from the Jett Foundation!

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Jett Foundation pops up in the Globe

November 23rd, 2009
Christine at the Joey Fund/Cystic Fibrosis Foundation Party

Christine at the Joey Fund/Cystic Fibrosis Foundation Party

The Joey Fund

While attending the Joey Fund/CFF fundraiser, Jett Foundation founder Christine McSherry took a moment to pose for a picture.  Little did she know that she would turn up a week later in the Boston Globe!  Congratulations to the Joey Fund and the Cystic Fibrosis Foundation for a wonderful event!

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Share Your Thoughts on Adaptive Sports

November 18th, 2009

Hey everyone.  As part of our philosophy that today counts, we’re asking everyone to share their favorite adaptive resources and programs.  In the past few weeks, we’ve talked about Piers Park and Adaptive Sports Partners of the North Country, and both of these programs have really shown me how great it is for us to get outside with our sons and just have fun.

Please, through a comment or through an email, share your favorite activity, program or place.  Help us put together a great resource for all families living with Duchenne.  Help us make sure that every day counts.

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