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Kathleen49

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ALSAC-St. Jude's Children's Research Hospital
July 17, 2013

My son is a St. Jude patient. He was diagnosed in Sep. 2003 with a baseball-sized malignant brain tumor, 3 days after his 9th birthday. They performed emergency surgery hours after the MRI that revealed the tumor, it was big and the swelling was so severe he was lapsing into a coma. We live in San Diego and I never imagined us traveling to Memphis for treatment, we sought opinions at CHLA, UCSF, Rady Children's in San Diego, and Children's Nat'l Medical Center in DC.

We ended up taking him to Memphis because at that time, they had a treatment available nowhere else in the U.S. that involved use of a lower dose of radiation to his brain and a treatment duration of 8 months instead of 2+ years that was producing higher survival rates than anything we could get elsewhere. The lower dose of radiation was the clincher, all radiation amounts to brain damage, and is particularly devastating to the developing brains of young children. We had great insurance coverage and did not choose St. Jude because of the financial benefits.

My son is 19 now and in a couple of months he will be a 10-year survivor of this tumor. Simply put, St. Jude saved his life and with better quality than he could have gotten anywhere else in the world at that time. He just graduated high school this past June and he is about to enter college, something that 10 years ago I did not believe was possible. I do not believe he would be in this situation if we had gone ahead with the treatments available in CA at the time of his diagnosis. The treatment he did then is now available in CA and other places. St. Jude is simply the best of the best and our family owes them a debt we can never repay.

They do operate using clinical trials, and they only treat patients that they have an available treatment for and expertise with. They do not say in their ads that they will take any patient, they state very clearly that "no patient will be turned away because of race, creed or inability to pay". They will bill your insurance if you have any and take whatever they get, a patient will never see a bill. They are privately funded, because of this they are not held hostage by the insurance companies/hmo's. In addition to patients that have conditions they've developed treatments for, they will also take patients who have rare diseases that have no available treatments and develop a custom treatment protocol for them. We also know of patients from other countries they will accept who have diseases for which there is no good treatment in their home countries. I know of no other organization that does this.

I encourage those who take issue with the CEO salaries to calculate those salaries as a percentage of revenue brought in and compare against similar organizations. St. Jude has huge operating costs and large financial reserves, part of this is so that when they take on a patient they are guaranteed the funding to finish their treatment. Some of the leukemia protocols are in excess of 3 years, St. Jude houses and feeds these families for the complete duration of treatment.

St. Jude will accomodate up to four people in any patient housing. If the patient is in the hospital, up to four other family members may stay in the patient housing. There is a meal allowance for use in the cafeteria, patients staying in Target House (apartments) get a weekly grocery card to offset expenses. They provide transportation to and from all of their facilities.

Perhaps the very best thing of all about St. Jude was that I can say that in my entire life we've never been shown such unconditional love by complete strangers, in Memphis not only did they take care of my son but also our family in the most loving way imaginable, body and soul. There is a saying at St. Jude, you go there with one sick child and you come home with 35, we hold so many of the friends we met there so very close to our hearts, and so many we've lost. Having a child with a life-threatening illness is perhaps one of the very worst thing a parent can endure and St. Jude ministered to all of us in just so many ways, I truly believe there is no other place like St. Jude in the world.

To Kathy Wolfe, who commented that on their form 990 they list no fundraising expenses, I'd like to direct you to form 990 for FY2012 schedule H, it's on page 64 of the PDF at the below link:
http://www.stjude.org/SJFile/990form-stjude-fy12.pdf

It says:
"THE FUNDRAISING SOURCE FOR ST. JUDE IS ALSAC WHICH RAISES FUNDS SOLELY
FOR THE HOSPITAL. BECAUSE OF THE HOSPITAL'S MISSION, PEOPLE NATIONWIDE
CONTRIBUTE VIA TENS OF THOUSANDS OF FUNDRAISING EFFORTS. ALSAC
CONTRIBUTED $442 MILLION IN FISCAL YEAR 2012 TO MEET THE OPERATING COST
OF ST. JUDE."

St. Jude doesn't hire any outside companies or people to do fundraising. To see the St. Jude fundraising expenses, you need to take a look at ALSAC's (American Lebanese Syrian Associated Charities) 990's, available on their page:
http://www.guidestar.org/organizations/35-1044585/american-lebanese-syrian-associated-charities.aspx

I hope this information helps.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served