“A Fifth Season…..Brightening the landscape of Batten Disease”
Saturday April 2, 2011 at 5:00pm
Cotillion Banquets
360 Creekside Drive
Palatine, Illinois 60074
Please join us for a benefit to fund research on behalf of the five Chicago children who are bravely fighting Batten disease. Called “A Fifth Season, Brightening the Landscape of Batten Disease.” A casual gala for a serious cause, the event will be held on Saturday, April 2, 2011, at 5:00pm at the Cotillion Banquets in Palatine, Illinois.
The five children are fighting Late Infantile Batten disease, an extremely rare, degenerative genetic disease. For the first few years, the kids developed normally, toddling, talking, and laughing like any other kids. Jasper (6) loved to explore… Bridget (6) always wanted to go-go-go… Ethan (6) had a passion for anything transportation related… (6) loved playing with trains…and his sister Laine (5) adored playing dress up.
Unfortunately, everything changed quickly. Between the ages of 2 and 6, the children began to lose muscle coordination and experience seizures. Within a few years, they began losing their ability to speak, walk, and feed themselves as their little bodies slowly shut down. Eventually, children with Batten disease become blind, bedridden, and unable to communicate. At this time, Batten disease is terminal between the ages of 8 and 12.
If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure. And we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away.
It is time to find a cure. It is our turn to help.
The Fifth Season fundraiser gala will provide a big benefit experience with a relaxed atmosphere, featuring fantastic live music, special appearances, an impressive silent auction, and an extensive appetizer, dessert, and open bar.
Dress for the event is casual. The cause is absolutely critical.
Please bring your friends, tell your neighbors, and spread the word about the Fifth Season event on Saturday, April 2, 2011. Together, we can help to find a cure.
CLICK HERE TO PURCHASE TICKET(S):
http://afifthseason.eventbrite.com
Bake Sale at Pingry Middle School in New Jersey
On February 18th, students at the Pingry Middle School in New Jersey will be holding a Bake Sale/ Pizza Sale/ Jewelry Sale to raise funds and awareness for JAB and the fight against Batten Disease. To kick this off, a school-wide assembly will be held on Valentine’s Day to discuss Jasper and the children who suffer from this deadly disease. A special thank you to Natalie, Maddy, Nancy, Simi, Ellie, and Katherine for their huge efforts in this initiative!”
The 2nd Annual Family Day of Play: A Birthday Bash Against Batten
At the Lakeshore Athletics Club in Lincoln Park on Fullerton Avenue, Sunday, January 23rd, 1:00 – 4:00 pm
Come join us for a day of fun activities for the kids (swimming, tennis, zumba, basketball and more!) With great food, coffee, dessert and a silent auction! And help to fight rare, fatal childhood disease at the same time! Bob Love and Sidney Green of The Chicago Bulls will be joining us at this event!
Tickets: $15 per child in advance/$20 at the door ($15 at any time for Lakeshore members); No charge for adults. Please click on the link below to buy a ticket on the website of our affiliate Partnerships for Cures.
BUY TICKET
Jasper Against Batten Fair Trade Coffee
DARK MATTER COFFEE COMPANY IS PROUD TO PRESENT:
THE JASPER AGAINST BATTEN BLEND
For every $15/ lb. of this coffee purchased, $5 will go back to Jasper Against Batten.
Dark Matter Coffee is a small-batch, craft coffee roastery that makes wonderful fair trade coffee. Their coffee has been featured in some of the top restaurants in Chicago: Alinea, Browntrout, The Drawing Room among so many other great establishments. You can also find them at The Randolph in New York. All coffee purchased can be shipped within five business days for no additional charge or if you are in Chicago, you can pick it up at the Star Lounge at 2521 W. Chicago Avenue. People are always welcome to stop by there to make a purchase!
Please click on the link below to buy our JAB coffee!
BUY JAB Fair Trade Coffee
* For now this product will be only available in the US and not in the Netherlands /Europe
Wine, Food & Music Event @ Binny’s: Friday October 22nd, 6:30-8:45
A Cocktails/Wine Tasting Benefit featuring Live Music by Ralph Covert of Ralph’s World and The Bad Examples
Binny’s and the Jasper Against Batten Foundation are proud to celebrate the Million Dollar Donation Mark for our initiative to fight this rare disease. On Friday, October 22, 6:30-8:45pm, we have organized a great evening of entertainment featuring the hottest new cocktails, delicious wines from around the world, hors d’oeuvres, a silent auction and music by Ralph Covert of Ralph’s World and The Bad Examples! Come and join the fight! All proceeds for this event will be donated to Jasper Against Batten. Entrance fee is $15.00.
Call (312)664-4394 or email lincolnpark@binnys.com for reservations or click on the link below for further information.
Binny’s Event
it’s now also possible to buy tickets ‘on line’ on the website of our affiliate Partnerships4Cures. Please click on the link below:
Chicago Marathon
On 10-10-10 is the Chicago Marathon. Our ABNAMRO Clearing Chicago colleagues Frank Hooglander, Jason Real and Wendy Stedehouder will run the marathon for the first time in their life! They will do this in honor of our JasperAgainstBatten organization to help us fund research that will find a cure for this terrible disease. If you want to support them & JasperAgainstBatten; please click on the link below to go to our donation section. Don’t forget to mention Frank’s, Jason’s or Wendy’s name in the ‘free text’ section! Many thanks and let’s cheer our heroes on on 10-10-10!!
Chicago Marathon PLEDGE LINK
VacanceSelect helps JasperAgainstBatten
The large travel agency VacanceSelect (based in the Netherlands) has generously decided to reach out to our organization. A group of young students from a Dutch high school wrote a very nice book with poems in honor of Jasper last year. They started to sell these books and all the proceeds were donated to our Dutch foundation. They did very well and even managed to get a report on the Dutch national television (see the link HartVanNederland.nl but it’s in Dutch)
The travel agency VacanceSelect has started a follow up around this theme. They ordered about 30,000 copies of the poem booklet. These copies will be distributed among the customers of VacanceSelect in the next couple of months. Thanks to VacanceSelect the disease will be brought to the attention of many and hopefully this action will result in more support for our organization. This will in turn enable us to fund more research and make further progress in our attempts to find a cure for this horrible disease. VacanceSelect and its employees have already kicked off by donating a significant sum of money themselves! Of course we hope that you will join them in their efforts to support this cause!
Chicago Shamrock Shuffle Run
March 21 2010 was the day of the Chicago Shamrock Shuffle run. We did run with two Fortis Clearing Americas teams that participated in this event in honor of Jasper and our foundation! And everyone of them did a great job! For more info: http://www.shamrockshuffle.com/
Many thanks for those who supported the runners and their cause; In total we raised almost $6,000 in donations which is awesome!
If you still want to donate for this event; please click on the link below or go to the donation section of this website. Don’t forget to mention which runner you support so we can keep track of the donations for this event and keep you up to date on this website of our progress! You can mention the name of the runner either in the ‘2nd billing address’ or in the ‘note to the seller’ section if you go online to donate.
Many thanks!
SHAMROCK SHUFFLE RUN PLEDGE LINK
Dutch trader’s poker championship for charity in Amsterdam
Who is the best poker player amongst all Dutch traders?
On Saturday the 27th of February, The Mood (Keizersgracht 125-127, Amsterdam) will host 100 traders who will bluff their way to become the first Dutch Trader’s Poker Champion.
Charity
All revenues out this tournament will go to charity. The winner will get the honor (and bragging rights!) of being the best poker player amongst all traders, nothing more, nothing less. This year’s charity is Jasper against Batten (Jasperagainstbatten.org). The Batten Disease is a cruel and rare childhood disorder for which there is currently no cure. Over time, children affected by Batten disease/LINCL suffer from seizures, mental impairment and progressive loss of sight and motor skills. Specifically, children become blind, bedridden, have to be tube-fed and are unable to communicate. At this point in time, Batten/LINCL is always fatal and ends in death usually between the ages of 8 and 12.
Buy-in
The buy-in is 200 euro per player (but all food and drinks are for free as we have found a sponsor who will pay for food, drinks and location). All proceeds will go directly and for 100 percent to the charity fund. Additionally there will be an auction and a possibility to donate to the charity on the day itself.
Rules
The tournament will be Texas Hold’em No Limit. The exact rules will be sent to each player 2 weeks before the tournament. Besides professional poker tables we have found a brush (referee) who is willing to solve any poker related problem that can arise in the heat of the game.
Respond
Please reply to the email adress below if you want to join. A group of around 20 traders from several trading entities have already confirmed their particiaption in this tournament. If you would like to form a team with your colleagues and want to play for the overall poker power house title, please subscribe as a team with at least 4 traders in 1 team (max 6).
The winning team can select next year’s charity and have the option to organize the tournament next year.
Sponsors
The name of each table will be auctioned. Please reply to this email if you want to place your bid to get your name or the name of your company on one of the tables. The highest bidder will have his name on the table where the final is played.
Thanks for your attention, see you at the 27th of Feb.
Please contact Iain Somers at Market Wizars B.V. for more information or to participate: email somers@marketwizards.nl
A Birthday Bash Against Batten: A Family Day of Play’ To Fight Rare Childhood Disease
Nothing exciting for the kids to do on a cold Sunday in January?
Join us for a fun day of activities, sports, pokemon, balloons, food, auction, cake, raffle and more…and help fight a fatal children’s disease and save a local child!
The Lakeshore Athletic Club will be hosting: A Birthday Bash Against Batten: A Family Day of Play’ To Fight Rare Childhood Disease.
Sunday, January 24, 1-4 pm (Chicago): On the same opening weekend of the highly anticipated Harrison Ford film, Extraordinary Measures, about a father’s heroic race to develop a cure for his children’s rare, fatal disease, Chicago families will be gathering at Lakeshore Athletic Club on Fullerton, to continue their own inspiring effort which so many school children started this past Spring on behalf of one of their own, Jasper Duinstra. This fun afternoon of activities, sports, auction, food and prizes will also be a celebration of Jasper’s 5th Birthday. For only a $20 donation per child, activities such as swimming, obstacle course runs, tennis, arts and crafts, basketball, and dance will be offered throughout the afternoon for children ages 3-10. There will be storytelling, face painting and Balloon animals as well and a Pokemon Trading Room will be set up for kids who want to trade cards. A silent auction will be held throughout the event, which will be MC’d by ABC anchor Ravi Baichwald and local vendors will be providing great food. Top Chicago Kids’ Photographer, Classic Kids will also be offering mini-photo shoot appointments onsite for a separate donation.
Best Buy, Jock’s Bar and Grill, Reinhart Food Service,NYC Bagel and Deli, Alpha Baking, Devil Dawgs, Caffe Baci and Kronos will be among those supporting this event, providing great prizes and food.
PHILLY option trading community email-athon to help find a cure for Batten disease in November
The PHILLY option trading community is partnering with the Jasper Against Batten Fund to raise awareness about Batten Disease, to support children who suffer from it and to help find a cure to this rare, fatal disease. The PHILLY option trading community will designate the month of November as a month to contact and email friends and family with a goal of raising $20,000 for the Jasper Against Batten Fund. The Jasper Against Batten Fund has raised in excess of $750,000 but they still need our help.
To participate in this; please follow this link: PHILLY Option Traders email-athon or click below on the word PHILLY Option Traders DONATE and mention the letters PHILLY in the ‘note to seller’ section at Paypal or on your check so we can keep track of this PHILLY action in the graph below throughout the month of November. $15,050.- has been raised in in this email-athon!
PHILLY Option Traders DONATE
Overview of previous fundraising activities:
Capstone Global Markets Charity Day
Capstone Global markets, a premier alternative investment fund based in New York city, hosted a fundraising event in favor of our Jasper Against Batten organisation on October 1st. Please find below the details. Paul Britton, the CEO of the firm has informed us that they raised a total of $160,000 for our foundation!!! This is the biggest succes we have had so far in terms of fundraising and puts us at almost the $750,000 in raised funds since we have started this organization about 5 months ago….A very big ‘thank you’ for Paul and his team for this major contribution!!
Chicago Triathlon 2009
Team TriHard, founded by Tim and Anna Johnson, comprises men and women athletes across ability levels and interests who gather each week to focus on their quest to complete the triathlon. Today, these athletes are banding together, now focusing their efforts on raising awareness and funding for Jasper Against Batten in the search for near-term treatments of Batten Disease. As part of these efforts, several of the team members will be racing the Chicago Triathlon, August 30th, in honor of Jasper. They will wear shirts honoring him and the fight against this deadly disease. In addition, several children of the TriHard members will be racing the McDonald’s Kids’ Triathlon the day before (Aug. 29th) in honor of Jasper.
Kids TriHard for Jasper is a youth triathlon group formed to raise awareness and funding for Jasper Against Batten in the fight against Batten Disease. They will be racing in the McDonald’s Kids’ Tri on Saturday, August 29th at Foster Avenue Beach. Up to 1,000 children are expected to compete.
Classic Kids Photography Promotional Photo Shoot at 917 W. Armitage on Friday, July 31st .
On Friday, July 31st, from 11:00-7:30, Classic Kids partnered with us and offered a special discount to supporters. Families donated at least $50 to The Jasper Against Batten Fund that day and received a 15-minute sitting for their kids, family, etc.. as well as one 4″x 6″ print of their choice. Classic Kids is donating an additional 10% of the proceeds from all photo sales from that day’s shoot. They also matched the donation amount with a gift certificate toward any future sitting. They are the premier photographers in Lincoln Park specializing in children, family and pet portraits and people will get wonderful shots of their family while supporting this cause. Refreshments were provided by Argo Tea and Sweet Mandy B’s, and the balloon animals were unbelievable. A huge thank you to Classic Kids for all of their time, effort and support as well as Argo Tea and Sweet Mandy Bs who have supported us on numerous occasions.
Binny’s Beverage Depot Wine Tasting Benefit at Ivanhoe Castle Tasting Room, 3000 N. Clark St. on Wednesday August 5th
On Wednesday, August 5th from 5:30-8:00pm, Binny’s will be hosting a Wine, Beer and Cocktail Tasting Benefit on behalf of The Jasper Against Batten Fund. Join us for a night of wonderful tastings, art, hors’ doeuvres and a silent auction. Donation: $35 per person. 773-935-9400
Dr. Robert Stevens at Health Source Chiropractic and Progressive Rehab. is offering a full consultation, examination and x-rays (2 views) Value:$150-$200, for no charge in exchange for a minimum donation of $35 to the Jasper Against Batten Fund. 4355 N. Lincoln Avenue, chicago, IL 60618: 773-528-1500
The Kid’s Dance Party at THE HIDEOUT last Sunday was a huge success! The kids had great fun, the parents were laughing! Even Jasper was there being his happy self! What a wonderful way to raise money for this effort.
Gap Kids Store in Lincoln Park, Chicago: Special Promotional Event was great. We hope everyone got their kids great clothing at amazing discounts while helping us fund treatment for Jasper.
The Dutch Club of Chicago held a fundraising event at Sedgwicks Bar and Grill to raise awareness and money for Jasper Against Batten. It was a great success! A big thank you to Andrew Enschede and everyone for making this happen!
A Chicago wide School-based Children’s Initiative is now underway to help create awareness of Batten/LINCL as well as raise funding for treatment that offers real new promise to save the lives of children afflicted with this horrific disorder. approximately 500 cans are being decorated by more than a dozen schools, public and private, throughout the city and distributed to local stores and businesses on behalf of Jasper Against Batten. The beginning of this event at the Oscar Mayer School was covered by ABC7 news, WGN, CLTV and was on the cover of the Sun Times Sunday, 17. Unbelievable!!!
Started by children at the Oscar Mayer Fine Arts Magnet School and Black Bear Academy on behalf of Jasper Against Batten, the children have designing collection cans for this cause and are now distributing them to local stores and businesses throughout Chicago.