Please join us for our 6th Annual Promise of Hope Beer & Wine Tasting & Auction Fundraiser!  Get your tickets today through our secure donation site... Contact Stefani for more information 978-808-6023...  Thank you as always for your support! Tickets

TEAM HOPE NEWS

"Mom Sings Her Heart Out in Hope for a Cure"
Good Morning Live - NECN News Channel 6
May 13, 2009

 

Stefani Bush is interviewed about the upcoming release of Project Cure's first CD compilation, which will take place at the "Promise of Hope" Wine Tasting Event on May 15th.

"Promise of Hope" Wine Tasting Makes the Top 5 List!
"Take Five" - LOWELL SUN
May 11, 2009

A Vine Time

Sipping wines for a good cause is the "it" thing to do. Mingle with the in crowd at the second annual Promise of Hope Wine Tasting Friday from 6 to 9 p.m. at the Courtyard by Marriott, 270 Concord Road, Billerica. There will be hors d'oevres, live music by Joe's Attic, live and silent auctions, raffles and loads of wines. The event benefits the Immune Deficiency Foundation and the children of

Team Hope. (978) 808-6023 or www.teamhope.info. Ticketse $30 in advance, $35 at the door. 

Team Hope Interviewed During Chelmsford Zip-Trip!
by Kim Carrigan - FOX25 NEWS
May 1, 2009


Meet the Peeps: Part 2
Stefani Bush is interviewed during Fox 25's Zip Trip through Chelmsford. Click here to see more video of this event.  Stefani's interview is the second in the "Meet the Peeps: Part 2" video above and begins at 2:18.

Team Hope Named to Red Cross Hall of Fame!
March, 2009

Team Hope is honored to be recognized by our partner, the Red Cross.
Click here to read the full story.


Team Hope Returns to Washington DC!
March 26, 2009



Once again, Team Hope was invited to participate in IDF's Capitol Hill Day.  As part of a delegation of IDF Volunteers, we met with legislators to share our stories and fight for better Medicare coverage of IVIG (a critical treatment for PIDD).  We met with Rep. Niki Tsongas' office, Sen. Kennedy's office, Sen. Kerry's office and Rep. Jim McGovern.  We are pleased to report that we had very positive reception from all those whom we met and we look forward to solving this important issue very soon!!

"Hoping for the Best"
by Max Bowen - BILLERICA MINUTEMAN
July 23, 2008

Team Hope is profiled in this article leading into or July 26 Blood Drive..
Click here to read the story.



Team Hope Heads to Washington DC!
April, 2008



In April 2008, Team Hope had the honor to head down to D.C. and represent the patient population in MA (through the IDF) on Capitol Hill!   We met with Senator Kerry's office, Senator Kennedy's office, and Rep. Niki Tsongas' office and shared our story and our concern for our patient population.   We have high hopes that this legislation will soon take flight! !

"Hope Keeps Growing in Chelmsford"
by Kevin Zimmerman - CHELMSFORD INDEPENDENT
March 20, 2008



Coverage of Team Hopes March 16 Blood Drive and Senator Kerry's appearance.
Click here to read this story!

"Kerry Gives Lift to Blood Drive"
by Angel Roy - LOWELL SUN
March 17, 2008

CHELMSFORD - Yesterday in Chelmsford, Sen. John Kerry met up with Bush.   But there was no debate, and both people were united for a common goal. 

The Bay State senator was on hand at the Senior Center to lend support to a blood drive for children afflicted with the primary immune deficiency disease, and he was presented with a plaque from Chelmsford resident Stefani Bush, who has two children battling the PIDD genetic disorder.

Finally, Bush and Kerry working together ...

We hope to have the complete article available soon!

"Local Families Band Together to Fight Childrens Illness" by Bridget Scrimenti - LOWELL SUN
March 13, 2008

CHELMSFORD -- The "magic cream" numbs Mark Spinale's stomach.  "I'm ready," he yells confidently.  He then endures what no child should have to -- a weekly blood transfusion to help his body fight off infection.

Mark was born with underdeveloped lungs, and doctors thought his health problems were mostly respiratory.  "Doctors said his lungs were ...

We hope to have the complete article available soon!

"Team Hope Battles for Kids' Immune System Disease"
by Mallika Marshall, MD - WBZ Channel 4 News
March 11, 2008



Team Hope is profiled in this Channel 4 News story . . .
Click here to read this story!

Team Hope Meets with Top Kerry Aide
December, 2007



Left to Right:  Neal and Michelle Fox, Eleanor Spinale, Drew O'Brien (Sen. Kerry's State Aide), and Stefani and Ralph Bush.

In December, Team Hope met with top Kerry aide Drew O'Brien to discuss our concerns over Medicare coverage of IVIG and share our stories...  The results of this meeting were phenomenal.   As a direct result of this one-on-one contact, Sen. Kerry has agreed to champion our cause and has introduced Senate Legislation to address our needs, making his announcement at our March 16, 2008 Blood Drive (see related stories).
(UPDATE:  Sen. Kerry has reintroduced the Medicare IVIG Access Act in 2009)

A big Thank You to Senator Kerry, Drew O'Brien (Sen. Kerry's State Aide) and Rep. Jim Miceli (D-Wilmington) for all your work to date.... and also to Rep. Niki Tsongas for taking the time to meet with in 2008 - we are excited that you have taken interest in our cause as well!   It looks like we are well on our way to moving towards change here in MA (and beyond) for our patient population!



"Chelmsford Residents Donate Blood to Help Children with Primary Immunodeficiency Disease"
by Heather Barrett,  CHELMSFORD INDEPENDENT
June 20, 2007



One of our first Blood Drives is covered in this Chelmsford Independent story.
Click here to read this story!

"Brother, Sister Battle Immune-Deficiency Disease"
by Heather Unruh, WCVB - Channel 5 News
May 3, 2007

Sasha and Will and profiled in this Channel 5 News story . . .
Click here to read this story!

"Heartbreak, Then Hope"
By Rita Savard, LOWELL SUN
April 19, 2007



CHELMSFORD -- Sasha Bush was born fighting. Of the first 40 days of her life, 28 were spent in and out of intensive-care units in Boston. Weak lungs and kidneys left her lying in a web of IV tubes and life-support machines.

"Immune-deficiency disease," doctors said.
"Oh, God, please no," said Sasha's mom, Stefani. "Not again."
Stefani and Ralph Bush had already been down this road. After their first child was born, life seemed to unravel. Three weeks out of every month, Will Bush was sick. They visited an immunologist. The blood work came back.   "We were told to avoid play groups, play dates, playgrounds, large crowds, sick people -- life was drastically altered after that day for us and it was scary as hell," Stefani said. 

Primary immune deficiency diseases are disorders in which part of the immune system is missing or does not function properly. The disorder is caused by intrinsic or genetic defects in the immune system.  A simple cold can develop into something life-threatening.

The day after the Bushes learned of Will's disorder, Stefani discovered she was pregnant again.   Sasha's immune deficiency is more severe than Will's. Now 19 months old, she requires weekly blood infusions to help stave off infection -- immune globulin therapy.  The Bushes call it "magic medicine." So does Sasha.  A single dose comes from the blood of thousands of donors. For the sake of Sasha and others like her, the Bushes ask that donations keep coming.

Dad sets down a blue, plastic case on the dining-room table.  "The tackle box of fun," he says.  It's filled with syringes, cotton swabs, latex gloves. All things a toddler shouldn't have to play with. But the family tries to make it a game. After all, Sasha can expect this ritual for the next three years.  Stefani writes the time, date and Sasha's temperature in a daily log.  "Ninety-nine point two, that's good."

The Dartmouth Street home buzzes with friends and family. Will, 3, excitedly runs laps around the kitchen, past a cat named Nala that licks its paws on the tiled floor.  "We're lucky to have such a strong support system," Stefani says.  Pulling on purple latex gloves, Stefani sticks a needle into a small glass bottle. The single dose is 10 milliliters.  "The first time we did it, it was like this," says Ralph, shaking his hands. "Now it's routine." 

Sasha stands on a chair next to the table. Ralph takes off her diaper.  The first needle pricks her upper bottom, below the small of her back.  Sasha whimpers.   "Binki," she cries.  Ralph gives her a pacifier and she's content.  The second needle goes into the other side. No problem.

A battery-powered syringe is placed inside a small backpack Sasha wears. Over the next couple hours, a motor will help time release the "magic medicine" into Sasha's system.  Holding her stuffed Piglet, she'll fall asleep on dad's lap, watching Mickey Mouse.   It's heartbreaking to see your child suffer.

The day doctors said Sasha needed gamma globulin-replacement therapy "felt like I had been hit by a truck," Stefani said.  As first-time parents, the Bushes had many expectations. But the life they had planned for their kids was not the life unfolding.  "Sometimes life does have to unravel in order to find the greater gift within," Stefani said.

On Feb. 26, Sasha had her first infusion.  "That little thing called hope just opened up and blossomed and I just felt like -- even though all this really scary stuff was happening -- well, I felt like there was some hope in all of this."

The Bushes now work to raise funding and awareness in Massachusetts about primary immune-deficiency diseases. Last week, Gov. Deval Patrick signed a proclamation declaring April as Primary Immune Deficiency Awareness Month. Stefani and Ralph ordered 1,000 awareness bands imprinted with "knowledge is power." All proceeds from the bracelets, selling for $5 each, will benefit primary immune-deficiency research.

With a little push from the Bushes, state Rep. Jim Miceli, D-Wilmington, has even drafted a bill seeking funding for needy families to obtain immune globulin.  And blood donors, Stefani says, are crucial. They make "magic medicine" possible.  On Saturday, May 5, at St. Mary's Church, 25 North Road, Chelmsford, the Boston Children's Hospital is hosting a blood drive in Sasha's name. Advance registration is necessary.

"You can't change things you don't like from tapping on the outside of the glass," said Stefani. "We have the ability to make a difference. Why not be the voice of change?"   To schedule an appointment for the blood drive, contact Stefani (Dalton) Bush at 978-455-4634. All donations will go directly to Children's Hospital in Boston and the Jimmy Fund.

PIDD AWARENESS MONTH PROCLAIMED IN MA!
April, 2007



State Representative Jim Miceli (D-Wilmington) presents Stefani with a proclamation signed by Governor Deval Patrick designating April as Primary Immunodeficiency Disease Awareness Month.




Stefani Bush and Towma Rastad  initiated the Proclamation effort in March and were successful in attaining recognition by Governor Deval Patrick the first week of April when he officially designated April as Primary Immunodeficiency Awareness Month in the state of Massachusetts.