E x c i t i n g N E W S I n s i d e !

To Benefit Research to Find A Cure For

FRAGILE X,

The Most Common Inherited Cause of

AUTISM

& INTELLECTUAL DISABILITIES

Worldwide

Thank you to BB&N and Head of School Rebecca Upham for once again allowing Patrick’s PALS to take place at BB&N’s Nicholas Athletic Center/ Jack Etter Gymnasium. So many things go into trying to make the tournament a special event, and it all starts with the generosity of BB&N!

The PALS Committee is excited to announce that Peter Rosenberg has agreed to be the inaugural Patrick’s PALS Honorary Chair.(Pictured with his son Corey at PALS XVI.) We couldn’t be more honored that Peter has accepted our invitation! Peter represents two of the more prominent

“constituencies” that have played a vital role in PALS success- Camp Skylemar & BB&N. Peter went to the same overnight camp as Bill, Jon, Jim, Scott and James, and his sons went there as well. Camp Skylemar alumni have faithfully played in and donated to PALS since year one, and their support means so much. Peter also attended BB&N, as did Bill, Jon, Steve and James. BB&N has also played a significant role in the success of the tournament, and as you will find out from looking through this pamphlet, both Skylemar and BB&N have come up big this year! Peter has contributed in a variety of ways to the success of this event. He was influential in helping us connect with former BC Men’s Head Basketball Coach (& new UPenn HC) Steve Donohue, whom became a PALS of the Year honoree. (Steve very generously provided a wonderful and very popular auction item for a number of years - A Day With BC Basketball.) Peter connected FRAXA Director Katie Clapp with a prominent scientist doing genetic research, and we were honored to have his presence at the tournament one year thanks to Peter. Peter has always made a generous donation to PALS. And, Peter’s son has regularly entered a team in the tournament, sponsored by - of course - Peter. Peter and his wife, Lori, live in Wellesley with their daughter Samantha (17), while son Jared (28) lives in LA, and Corey (24) in Cambridge. Peter is a partner at Ropes & Gray LLP in Boston.

Our Grat i tude to BB&N!

From L to R: Bill Rome, Jon Pressman, Steve Savarese, Jim Marks, Scott Katz and James & Pamela Vershbow.

2015 Patr ick ’ s PALS Honorary Cha ir

T h e P A L S C o m m i t t e e

As usual, graduations and commencements will dot the calendar when Patrick’s PALS XIX, a three-on-three basketball tournament designed to raise money for Fragile X research, is held on May 30, 2015 at the Buckingham, Browne & Nichols gym in Cambridge, MA. Graduations are synonymous with transitions: the end of one phase of schooling and the commencement of another. And this is no less true of Patrick who last month graduated from LABBB, the school he had attended for many years, and transitioned to a new program -- all triggered by state rules tied to Patrick turning 22 in February. Patrick will not have the same experiences that many have at age 22: the first “real” job post-college graduation, perhaps a new city with a new apartment. But, at his new program, Patrick will be the same smiling boy who has made measurable and steady progress over the years in traditional education, socialization and life skills as he became an adult. He will have his parents, Pam and Jim Vershbow, whose devotion to his well-being is granite bedrock wrapped in the warmth of their love. And, Patrick will have you. You are a loyal army of supporters who for the last 19 years have marched alongside him and touched him and the FRAXA world with your generosity, an effort that has made Patrick’s PALS the longest, continuous running event in the field and recently culminated in Jim being named to the FRAXA board. In short, as we close in on the million dollar fund raising milestone, what began as an idea two decades ago amongst high school friends has blossomed into an event that is part of the fabric of the Vershbow’s lives, the FRAXA community and yours. We ask that you, once again, participate as you always have, whether by donation, contribution of an item to our silent auction, attending and cheering, sponsoring a team (or perhaps even playing) and simply spreading the word that concerned citizens can and do make a difference as embodied in Margaret Mead’s inspirational words printed above. Please help us make Patrick’s graduation and the commencement of Patrick’s PALS XIX our best year ever. Sincerely, Bill Rome

Never doubt that a small group of thoughtful,

committed citizens can change the world.

Indeed it’s the only thing that ever has.”

- Margaret Mead

D e a r F r i e n d s o f P A L S

Catching you up on FRAXA’s efforts begins with the news that 45 new grant applications have been received for 2015! By April 1, when the scientific review has been completed, FRAXA will announce new awards. They will fund about one-fourth of these projects, based on current funds. Aside from direct funding, FRAXA is doing more and more consulting with pharma and biotech companies because interest in Fragile X is expanding. Ever since giants Roche and Novartis tackled Fragile X, and even though they have failed so far, new companies have been joining the field. This has reenergized FRAXA, and it should convince one and all that a donation means as much as ever. While FRAXA Research Foundation’s research goals remain largely unchanged, the landscape in which we operate has changed significantly in the past year. Negative results from the (above-mentioned) major clinical trials of investigational agents have meant the end of development of mGluR5 antagonists for fragile X. There is still much evidence that this drug class could be successful as a fragile X treatment, but we do not see the need for more “proof of principle” research on mGluR5 antagonists. Other potential areas of interest include exploration of combination treatment strategies, both in animal models and in clinical trials. An integrative approach seems essential at this point, one which recognizes the wide array of disease-modifying therapeutics which have already demonstrated rescue in preclinical models of fragile X and attempts to prioritize them in some way. In short, many things seems capable of rescuing fragile X in mice, but even the best of them don’t yet work in humans. We need to know why. We want to fund clinical trials of rational therapeutics for fragile X. It is essential that any proposed clinical work be based on our latest understanding of disease mechanisms in fragile X. A randomized controlled trial of lithium is our highest priority and we are actively seeking proposals for such a trial. Other available drugs have also been shown to be potentially disease-modifying in fragile X (minocycline, baclofen, and lovastatin, etc.). We recognize the need for improved outcome measures in fragile X and other autism spectrum disorders clinical trials. As always, proposed outcome measures require validation, and they require testing in trials to demonstrate that they can measure actual treatment response. This is an obvious Catch-22: to show that an outcome measure “moves” with treatment, we need a proven, effective treatment; but to get proven, effective treatments, we need better outcome measures. We look forward to making great strides forward during 2015. Sincerely, Katie & Mike

Katie Clapp, MS President & Co-Founder

Michael Tranfaglia, MD Medical Director,

Co-Founder

A FRAXA Update

What a Great D

ay! What a

Great Year- O

ver $90,000 Raised!

!

T h a n k Yo u F o r Yo u r S u p p o r t ! !

Patrick’s PALS XVIII, MAY 31, 2014

Fate. Fate is said to be very fickle- and indeed it is... At the end of a very long day of labor, Patrick entered the world on February 18th, 1993, as a boy with his whole life ahead of him. Patrick didn’t enter this world knowing his fate would be cast by a single gene, a gene that shuts down and fails to produce a protein vital for brain development. Twenty-two years later that life brings him to a new crossroad, one that stands to hold the fate of the life he has yet to live.

For 18 years you have so kindly allowed Patrick to be the story, but he is but one player out of every 4000 males and every 6000 females. To us, of course, he is the one and only- but for you, it’s important that you see Patrick as representing all the hardship and joy that comes with having a child with special needs. We certainly know that every disability has its’ own unique challenges. And while Fragile X parents around the world meet those challenges head-on each and every day, FRAXA never wavers from the belief that finding a cure is the only acceptable outcome. On February 12th Patrick graduated from the LABBB Collaborative. The day served as an example of how a program such as this one, and its’ teachers, can do so much to help. The day was about Patrick- but, it was also about every other boy and girl in the program, each with their own disability, experiencing a transition that they will have to someday face. As for Patrick, he handled the day remarkably well. He was asked to do some difficult things that tested his sensory limits, but as you can see from the pictures, he was a handsome graduate- and we couldn’t be more proud! And so, Patrick is now at the age where he is considered an adult, and by law, those like Patrick are required to move on from programs that might be serving them very well, to new opportunities that will hopefully lay the groundwork for his future. Patrick is now enrolled at Beaverbrook STEP (more commonly referred to as Options Unlimited) in Belmont, MA. Pamela and I have spent the past year looking at adult programs for Patrick, and honestly, it was a challenge to find the proper fit.

Hopefully, Options is the right place for Patrick. It’s hard not to like that name- Options Unlimited - because they treat every adult in their program as the individual that they are, and they do everything they can to figure out what the individual likes the most and does the best. Using this information a plan is developed that translates into employment/volunteer opportunities in the community. Life skills and vocational training continue to occur, but there’s

definitely an emphasis on moving forward and recognizing the reality, as harsh as it may be, that life stops for no one, much less someone with in Fragile X.

P a t r i c k

Up to the very end LABBB challenged Patrick in ways that have only made him a more able individual; his language, behavior, personality and intellect all improved by leaps and bounds. So much so, that it allowed us decide to add a member to the family- a dog! For years, our daughter Abigail has wanted a dog, but we always shied away, believing the challenge too great for the “delicate nature” of our day-to-day life. The one thing that contradicted this way of thinking was Patrick’s remarkably gentle way with our cats… and, in recent years, his walks with two of his assistant teachers- and their dogs.

Luna (a Black Lab) was born in June of 2014 and moved in in July. Patrick has been wonderful with her. He’s very careful, and rightfully so. Luna is every bit the puppy, and the one thing that can clearly put Patrick at arms-length is if she jumps up at him. But, a day doesn’t pass without Patrick saying at least once “I love Luna.” Our hope is that in the years ahead, Luna will be every bit the companion to Patrick that we envisioned when we brought Luna into our lives- and that Patrick will embrace the responsibility that comes with caring for and loving her. We’d be lying if we said we weren’t more than a little nervous about what lies ahead for Patrick. There’s the danger of simply getting too far ahead of oneself-

imagining a time when we aren’t there for Patrick. Pamela and I can only hope Options is as good (or better) than what he has experienced the past five years- and that he continues to grow. Luckily, though, we have YOU- your support, your interest, your investment in this cause. It doesn’t buy Patrick more time to develop, but it does give him and FRAXA hope. Fate. Patrick was dealt an awfully bad hand in his early years, riding the roller-coaster of bad health and developmental roadblocks. Recently, life has been kinder to Patrick, and what’s to come is anyone’s guess. We plan on being there for him for a long time to come. You have been there all these years, and so fate is clearly not fickle about everything. Thank you for your support- we are eternally grateful! Sincerely, Jim & Pamela

& F r a g i l e X

Last year Steve Karp came through in a big way. His matching gift of

$25,000 required raising $25,000 from Camp Skylemar alumni- and a

select group of alums came up big to meet the challenge that Steve put

forth on behalf of Fragile X research. Steve has generously

awarded Patrick’s PALS another matching gift in 2015 (that

applies to ALL donors) of $25,000!

Jim Vershbow attended Camp Skylemar in Naples, Maine for many years

growing up. His brothers all went. PALS organizers Jon Pressman, Bill

Rome, Jim Marks & Scott Katz went. Countless donors to Patrick’s

PALS have attended as well. Skylemar is a special place attended by

great people - and among those people is one of Skylemar’s original

campers - Steve Karp.

Steve is a Real Estate Developer and also is Chairman of the Board of

Trustees of Boston Children’s Hospital and Trustee and Past Chairman of

Children’s Hospital Trust.

Great News

Stephen R.Karp Follows Up His Matching Gift In 2014 With

Another One In 2015!!!

Your Donation Means More Than Ever! Every Dollar You Donate That Brings Us To A Total of $25,000 results in a Matching Gift

of $25,000 From Steve Karp!

T h a n k Yo u T o S t e p h e n R . K a r p &

Jeffrey Lurie is responsible for taking PALS to new heights in 2015, in the form of combined acts of generosity by the Lurie Family Foundation and the Nancy Lurie Marks Family Foundation. First, there’s an upfront gift of $25,000 - a remarkable gesture! If that wasn’t enough, a matching gift of $25,000 (challenging primarily BB&N alumni) has been awarded to PALS by the foundations as well.

Jim Vershbow attended BB&N (previously B&N), an independent school in Cambridge, MA that was once all boys, but became co-ed in 1975. PALS organizers Jon Pressman, Bill Rome & Steve Savarese went as well- they were all Class of ’79. Countless donors over the past 18 years have been graduates of B&N/BB&N. Add to the list one Jeffrey Lurie, B&N, Class of ‘69. Jeffrey’s talents begin with his stewardship of Screen Pass Pictures, which has garnered two Academy Awards since 2010. And, as longtime Owner and Chairman (since ‘94) of the Philadelphia Eagles, Jeffrey breeds success on and off the field. Under Jeffrey’s guidance the Eagles have become community leaders with their charitable and environmental efforts. Lurie is a director of the Nancy Lurie Marks Family Foundation (NLM), which devotes much of its resources to autism research and education. More recently, the Lurie Family Foundation was established with an emphasis on health issues, especially in the areas of autism and cancer research. The Foundation also supports documentaries addressing global issues through Screen Pass Pictures. Says Lurie: “Those who have autism are wonderful people… They are often unable to effectively communicate with others. A great deal more research needs to be done.”

In Support of PALS!

Jeffrey Lurie Responsible For An Upfront Donation, And Then A Matching Gift On Top Of That!!!

Your Donation Means More Than Ever! Every Dollar You Donate That Brings Us To A Total of $25,000 results in a Matching Gift

of $25,000 From Two Lurie Foundations!

Je f f r ey L u r i e F o r T h e i r S u p p o r t !

A 3-on-3 Basketball Tournament To Benefit Research To Find A Cure For Fragile X,

The Most Common Inherited Cause Of Autism And Intellectual Disabilities Worldwide

Saturday May 30th, 2105 9AM - 3PM

@ The Jack Etter Gymnasium In The BB&N Athletic Center, Cambridge, MA

P a t r i c k ’ s P A L S X I X

Player Entry Fee is $50 Fee Includes: Coffee & Donuts, T-Shirt, Gift bag,

Lunch, Refreshments Contests with Prizes A Silent Auction of Sports Memorabilia, Tickets

to Sports Events & Other Great Items

About The Day

32 Teams Entered Maximum of 4 Players to a Team Single Players Welcome 4 Half-Courts in Use Double-Elimination Trophies & Gift Certificates to the Finalists

How To Sign Up To Play

Contact James Vershbow, Tournament Director

Phone: 617.599.2641 Email: Patricks.PALS@comcast.net

About The Basketball

P A L S & F R A X A

Patrick’s PALS was established in 1997, with two goals in mind- goals that remain unchanged today. Goal number one is to raise awareness. Fragile X is so much more commonly known in the medical world today, but it remains a relative unknown compared to other “name” disabilities. Goal number two is to raise as much money as possible. Every cent PALS raises goes to FRAXA; when you donate to FRAXA, 93 cents of every dollar goes to research and education.

FRAXA’s goal remains the same as it did when it was established in 1994- to find a cure! They accelerate progress toward effective treatments and ultimately a cure for Fragile X, by directly funding the most promising research. FRAXA funds grants and fellowships at universities all over the world, and has funded more than $24 million dollars in top-notch science. Patrick’s PALS is proud to be one of the many events, around the country and around the world, that support the efforts of FRAXA. We thank you for your support!

How To Connect With FRAXA President & Co-Founder is Katie Clapp

Phone: 978.462.1866 Email: kclapp@fraxa.org Mail: 10 Prince St., Ste.203, Newburyport, MA 01950 Web: www.fraxa.org

Donate: fraxa.org/event/patricks-pals-xix-tournament/

How To Make A Donation

Donations can be made Online at the FRAXA or

Patrick’s PALS website All donations are welcome and tax-deductible

Please mail checks to James Vershbow & make checks

payable to FRAXA Don’t forget to ask your company if it has a matching

donations program FRAXA’s tax-exempt ID # is 04-3222167

How To Connect With Patrick’s PALS Director of Patrick’s PALS is James Vershbow

Phone: 617.599.2641 Email: Patricks.PALS@comcast.net Mail: 46 Lovell Road, Watertown, MA 02472 Web: www.PatricksPALS3on3.org

Donate: patrickspals3on3.org/contact-us---make-a-donation.php

FRAXA was founded in 1994 by three parents of children with Fragile X to support scientific research aimed at finding a treatment and a cure. Back in ‘94 there was no Fragile X website or listserv, and only a handful of scientists were studying Fragile X. By 1997 Patrick was 4 years-old. And in 1997, four friends (Jim, Jon, Billy & Steve) united by having attended high school together at BB&N (it so happens that FRAXA Co-Founder Katie Clapp attended as well, a year ahead of the guys) and remaining best friends over the next 20 years, came together along with Pamela to give life to Patrick’s PALS. Since PALS inception, two close friends, Jim and Scott, have joined the team. Eighteen years later we are proud to serve the vision that FRAXA tirelessly maintains. While the goal of a cure has yet to be met, scientific research made possible only because of FRAXA, has led to drug trials that lay the foundation for hope! Friendship, dedication, determination, love, devotion - these steppingstones, and more, are what makes PALS and FRAXA more than just a vision. No one can predict when a cure will arrive. We are honored though to share our efforts with you because we believe that some day what we will be sharing with you is a story of ultimate success - and a better life for all those with Fragile X.

Enter A Team… Sponsor A Team… Make A Donation…

It all Supports FRAXA!

Enter A Team… Sponsor A Team… Make A Donation…

It all Supports FRAXA!