Monday, May 30, 2011

I moved my blog

Hey everyone!

I have moved my blog.  You can now find us at:

Thursday, April 7, 2011

Measuring Up As a Father

Pop culture has done the male psyche a great disservice.  If you watch a modern sitcom, the dads are almost always portrayed as bumbling idiots.  Nice guys, but somewhat inept at the same time.  Think of Ray Romano or George Lopez or any other father on one of these shows - they are all love-able

But that is not the man I want to be.  And certainly, there are real men out there.  Men whose devotion to their families is utterly inspirational.  Dads that didn't listen when they were told to accept an disastrous fate.  Thank God for stubborn people.  Without them, those the question assumptions, challenge "authority", nothing would be different.  I would put these guys in my Dad Hall of Fame. 

The first guy is Mark Dant.  Mark's story to me is amazing because his effort has changed the life of generations of MPS kids.  He didn't except his son's "fate" when he was told his son had MPS I.  Specifically, that he should go home and expect him to die by mid teens.  Mark's son Ryan was three at diagnosis and he is now twenty two.  I won't rehash the whole story, it has been written several times.  I like this version.  Bottom line, Ryan is a grown healthy man and many kids today are better off because of what the Dants accomplished. 

I was lucky enough to have lunch with Mark on Wednesday and he is an awesome guy.  He is so humble and down to Earth.  Mark is actually a chief of police in Carrollton - a town close to me.  It would probably put a lot of pressure on him to hear this but he is a hero to me.  I certainly don't get the feeling from Mark that he wants to be anyone's "hero". 

When Ryan was diagnosed, Mark said he wanted to start a foundation.  He was told "don't bother, save your money for your medical bills - you will need it."  He didn't listen.  He funded the early research on enzyme replacement for MPS I. Because of Mark and Dr. Emil Kakkis enzyme replacement exists as a viable therapy for MPS and related disorders.   Mark is too modest to every say anything like that.  Dr. Joseph Muenzer explained that to me.

Then there is the story of Dick and Rick Hoyt (aka Team Hoyt).  The son was rendered a quadriplegic through brain damage that occurred during birth.    He was told to institutionalize his son because he would forever be a vegetable.  He didn't listen.  He and his wife watched their son's eyes and realized that he was intelligent.  They built a computer for him to communicate and he lived a full life, even graduated high school and college.   Want to know what is even more amazing?  His dad completed an Ironman Triathalon with his son.  WOW!  That is (swim 2.5 miles + bike 100 miles + run a marathon).  I can't even run two miles - and that is without towing a grown man.  That is unbelievable.  Through his undying devotion, his amazing love he gave his son something special: the feeling of belonging and of accomplishment.

First off, and on the lighter side, is this guy tough or what??  This dude looks like he eats nails for breakfast!  He's no spring chicken here either!  Wow.  Just amazing.

You can always look back at these stories and ask, "Do I measure up?" and you know what?  It is a completely unfair question.  First, these stories only share the triumph, they don't (and can't) convey they heartache that these families went through.  Nevertheless, one day I hope that I can leave a legacy like these men - in some way.

Saturday, March 26, 2011

Reed and the Burning Bush

It is with a new perspective that I read the story from the Bible in Genesis 22.  This scripture tells the story of how God asked Abraham to take his son to the desert, find a burning bush and sacrifice the son he loved as a burning sacrifice.

Abraham loved his son Isaac but followed God's command.  Before he killed his son the voice of God said:

"Do not lay a hand on the boy," he said. "Do not do anything to him. Now I know that you fear God, because you have not withheld from me your son, your only son."
And so Abraham was spared his son.

If you are like me, you probably read this passage and wondered "when could this passage ever have meaning in my life?"

I read it the other day and it now makes perfect sense to me.  We have to be willing to "give our family back to God".  Whether it is in one year, 10 years or 70 years they will all die and life on this planet makes no sense unless we believe in some higher power, something after this life.  Even our little children, as much as we think they are "ours" they really aren't.  God is only letting us borrow them and one day he will want them back.  It really our job to try and give them back better than we found them.

For Reed, I have been agonized by his sickness.  Sanfilippo Syndrome is horrible.  It does really bad things to children that have it.  How can we ever rationalize such an illness?  You can't and that really *is* the lesson.  We can't make sense of why Abraham would be asked to offer his son as a burnt sacrifice and I can't make sense of why Reed has this awful disease.  All we can do is give our children back to God in a better spiritual condition than we found them.

Monday, March 21, 2011

A Father's Perspective on His Very Sick Kid


This blog entry is for my fellow fathers, those that have had to suffer the pain of hearing that one or more of their beloved children is terminally ill.  Our son Reed has Sanfilippo syndrome, which is a rare, terminal genetic disease with no known treatment.  The disease causes nueeuodegeneration and a child that appears to grow normally for the first few years will slow developmentally, regress and finally die typically around fifteen.

As someone commented the other day, online communities like Facebook have brought together these rare disease communities.  It is a mixed blessing.  While I get the benefit of knowing parents in similar situations I also learn about all the poor children that die and see the pictures of where my sweet boy might end up.  Reed, my son, is only three and almost no one would guess that anything is wrong with him.  We got an early diagnosis.  That gives us time to fight and gives purpose to my life.  For that I am grateful.  At the same time, it feels often like I am trying to lift a bus off of him.

While I have met a few MPS III dads, I know far more moms.  The moms are more active in the forums.  They constantly send prayers to one another and cherish the small victories that each other obtain.  These moms are awesome, my hats off to them.  I am in awe of their grace and strength.

I probably know less than ten Sanfilippo dads.  For all you others, I feel like I know you because I have taken a few steps in your shoes.  The experience of a dad may be different from the mom.  We typically see ourselves as the providers and protectors of the family.  Speaking for myself, the guilt of not being able to protect and help my son was overwhelming.   My anguish reached a point where I could almost not function.  I took medications, spoke to a therapist, anything I could think of to help.  The meds did help...but I did one thing that helped even more.

I forgave myself.  Stupid as that may sound, I sat down and told myself that I will do everything I can and that none of us are guaranteed a single day.  I should be grateful for this day I just had and give praise to God.

I am a Christian and in my faith we believe that God sacrificied his only son to cleanse away our sin.  I figured if God could forgive me I should try to forgive myself.  

Over the last two weeks, my conscious effort to remain positive has opened doors that I would have never expected.  Someday I will share these stories with you...but not yet.

One thing for sure has happened, people are more open to me.  Having a very sick kid causes some people to move close and others to run away.  No problem, I honestly shut down when I see really bad news about the older Sanfilppo kids too.  It doesn't  mean I don't love them, it is just that I can't deal with processing another loss right now.

My takeaway: whether you have sick kids or not, enjoy each moment with them.  This life is short.  Do your best, love God and forgive yourself.

All my best,

Tuesday, March 8, 2011

SCRF Gala: Pictures and Stories of Sanfilippo Families are Needed!

Elisabeth Linton's family set up the Sanfilippo Children's Research Foundation (SCRF) 12 years ago when their now almost 17 year old daughter Elisa was diagnosed at age 4.  Each year the gala raises several hundred thousand dollars to fund research, most recently that of Dr. Fu from Ohio and Dr. Biggar out of Manchester.

You can read more about the gala here.

This year's theme is "Cooking up a Cure", and they are using the theme to showcase the amazing medical strides that have been made in recent years.  There will be about 600 attendees, and Elisabeth has asked Sarah Hamza to reach out to our  families and inquire if we would be willing to share some photos of our kids, as well as any relevant details of our journey.
The specific request is for photos from as many Sanfilippo families as possible, so that supporters of the condition can come to know some of the faces of the children their fundraising dollars will support.  It would be great if you could share photos as an infant, at or near diagnosis, and now.  Smiling happy photos that show the joy of life we all have learned to cling to, in spite of the heartache.

If you are interested, please send an email with your story and photos to:

The event is being held on April 7th, so if you can get your info over to Sarah Before the end of March that would be ideal!

Thanks to the Hamza's and the Linton's for their important work!
The Beautiful Linton Family

Beautiful Sophie

Monday, March 7, 2011

The Good Search Challenge

Everyone loves a good challenge, especially when it is for a good cause.  We need your help to beat Sanfilippo Syndrome, a devastating childhood disease.  What could possibly be a better cause?

Yes, donations are great (see that little donate button to the top right, it works!).  However, if you can't afford to donate, you can still help.  All you have to do is replace your normal search engine with Good Search.  The money is coming in but we need to get even more users!  Every search you do will earn us one cent.  We need your help!  Make the switch and help other people switch!

Step 1: Start using good search
Step 2: Show one other person how to use it
Step 3: Share this challenge through Facebook, twitter and email!

Help us Kick Sanfilippo's Butt

Step 1: Use Good Search

Option 1: Install the Good Search Toolbar.
Option 2: If you don't like toolbars, Just set as your home page
Either way, don't forget to say that you are goodsearching for "Team Sanfilippo".  You can see all the details in my previous post here.

Leave us a comment below and let us know who you are doing your search for!

Step 2: Show one other person how to use good search

We really need lots of people to use the search engine, the key is in getting lots of people to actually use it!  So, don't just email and hope for the best.  We need your help to actually show someone how to use it.  Help your spouse, friend, Mom, Dad, whoever actually set Good Search as their homepage (or download the toolbar).  If you don't ask, people will forget, get to busy, etc.

Find someone that uses their computer for work and actually does a lot of searching.

 Bad Example: Great Great Great Grandma

Nothing against Grandma but, if she is just learning to use that new fangled computer thingy,  this may not be the best way for her to help.  You see Team Sanfilippo actually makes money when you do a search (about a penny per search) so we need people that actually use their computer, a lot.

Good Example: People who Use Computers for Work

Cousin Irkle, that does a thousand searches per day = awesome.  See this guy, he searches a bunch!  We need him on board.  Just remind him that Good Search actually uses Yahoo! behind the scenes so he's gonna get great search results. 

Step 3: Share this challenge on social media

OK, now you can send out that email and post to Facebook.  See that little thing at the bottom? Click the little "F" symbol and post this to your Facebook page.  Click the envelope and we'll help you start an email.  The "T" sends the message out on twitter.  Just remember that you will most likely have to actually follow up with people and remind them to use it!

If you have a blog, please post a pointer to this page!  We need your help to raise money for our kids!

Thanks again,

Sunday, March 6, 2011

Good Search Part Deaux: Searching without the Toolbar

In a previous post I introduced the GoodSearch search engine.  You recall that you can use it just like you would use Google and you raise about $0.01 per search!

Well, check it out:

Good Search Results for 2011
We doubled the number of searches from January to February!  And, with only 6 days in March gone, it looks like we are gonna double it again. 

My good buddy Kenny Taras told me that the Good Search toolbar made his machine too slow.  His advice was to just set your Home Page to Good Search and do the searching that way.  Works for me!

The nice thing about the tool bar is that it automatically figures out if you are shopping on a web site that donates to "Good Shop" and does the donation automatically.  So, if you don't have a problem with that approach, it's still a good way to go.

Keep up the searching and spread the word about Team Sanfilippo on Good Search!


Tuesday, March 1, 2011

Interesting Book on Drug Development and Discovery

If you want to educate yourself about the pharmaceutical industry (and we all should), I highly recommend this book.  The first section of the book is all about recent advancements in biotechnology and offers a (somewhat jaded) view on what the author thinks about big medicine.

Personally, I thought it was amazing because it talked about how the first enzyme replacements were produced.  In particular, it talks about a doctor at NIH that harvested the enzyme replacement for Gaucher disease from human placentas.  He and his team liquefied placentas for 3 years in order to produce enough enzyme for a small number of infusions (like 4-5).  The infusions were given to a very sick 4 yr old child.  Up until that experiment, nothing had been shown to work,  with just these few infusions, this sick child became temporarily well again.  All to vividly, I can imagine how heartbroken the parents felt when the enzyme ran out and they figured out it would take three years to build enough production capacity to produce a steady enough stream of enzyme to actually do a clinical trial.

Reading this book, I realized how far this industry has come.    It may a bit academic or too close to home for some people. If you read it (or have read it) let me know.

Sunday, February 27, 2011

The Inequity of Rare Disease Knows No Boundary

The treatment of people with rare diseases is not just a scientific problem.  In many ways, it is more of a social and political issue.  If we can solve the political problems, the science will follow.  As a world we must unite to give fair treatment to all who suffer from a rare disease.  As individuals or even on a disease-by-disease basis we are rare but together we are strong.  25 million people in the US alone suffer from rare diseases.

Neither is Rare disease a national problem.  Rather, they are a problem that transcends boundaries.  It is true that much of the commercial development for treatments of rare genetic diseases are done in the US.   However, fair treatment of people with rare disease in people throughout the world will help all of our cause.  That is why International Rare Disease Day is so important.  By advocating for fair treatment, we will create an environment where technology and innovation will flourish.  By eliminating the inequities that are suffered by people with rare disease around the world we encourage new investment by the smart people that are working to cure these diseases.

That is why on International Rare Disease Day, I want to support the efforts of my good friend Simon Ibell.  Please take a moment to check out what Simon is doing and help us spread the message:



Tuesday, February 22, 2011

The Sad Truth About the US Rare Disease Drug Approval Process

 Before I get into the meat of my blog post, I would like to start by saying that I am in no position to endorse any treatment.  I put more faith in the feedback of medical experts, patients and parents who have experience with them.  This post is really more about what I have learned about the flaws in the process of getting approval for treatment of rare diseases.  It is also about what we can do to make them better.

For my son's illness there is no approved treatment.  Parents of Sanfilippo patients, and all rare diseases,  must unite to encourage a rational therapy evaluation process.  We need an approach that allows fast track approval for medications - similar to what is available to AIDS patients.  Rare diseases pose unique challenges because of the variation in the way these diseases affect each person and the challenges with building statistically significant outcome data.

 When we were first found out that our son had elevated urinary GAG levels (a marker for MPS diseases) we assumed he had Hunter Syndrome.  Without treatment, Hunter Syndrome is - like all MPS diseases - an absolutely catastrophic disease.  When I went to the Shire website to research treatments, I saw the following quote regarding the efficicacy of Elaprase:

In a clinical study of 96 patients with Hunter syndrome, weekly treatment with ELAPRASE was shown to improve walking capacity in patients after one year of therapy.

Now, I don't know about you but I can tell you when I found out my son had a life threatening disease, the idea of him walking a little better wasn't a huge comfort.  It was only after speaking to adult patients and talking to our geneticist that I learned their opinion that Elaprase is an amazingly effective as a treatment for MPS II.  Our doctor had even used words like "miracle drug" for Elaprase.   Where the heck was the disconnect??!!!

I was told by my doctor that the FDA required an objective "endpoint" measurement to allow Elaprase to proceed through clinical trials.   For rare diseases, this data is apparently very hard to gather in a meaningful way.  

Since no treatment is approved, Sanfilippo parents are extremely anxious about what options are on the horizon.  The huge turnout by MPS III parents at the LDN World conference proved that to me.  I joked that  parents of children with other MPS diseases were home with their children getting treatment.

MPS III does have solution within the next two years.  Intrathecal enzyme replacement for MPS IIIA will go hopefully into Phase III in 2012.   Zacharon will hopefully produce a new small molecule drug that will address MPS I, II and III. 

The sad truth is applying a general purpose disease policy to rare diseases results in:
  • Slowing the time to market of meaningful new drugs
  • Discouraging drug companies to invest in rare diseases where approval risk is high
The good news is that this isn't something we have to take on individually.  Dr. Emil Kakkis, the doctor that was made famous by developing an enzyme replacement treatment for MPS I,  has created the Kakkis foundation to do just this.  This wonderful man has funded this foundation largely with his own money.  His message will be come even more powerful if it comes from you.  You see, congress won't necessarily trust industry experts asking for reform but they will listen to you!

Go to the web site for the "Cure the process" campaign and use their automated tools to contact your politicians.  It is super easy, just click "Take Action" and select write your congressman.  The web site will ask your zip code and help you write emails to all of your representatives.  Make sure to add a personal message about your kids, grandkids, relatives and friends.  Doing so will make the message more effective.

Dr. Kakkis is Lobbying Congress to:
  1. Establish a new office in the FDA dedicated to rare diseases
  2. Devise clinical study approaches specific to rare disease
  3. Create a new standard for endpoints that helps rare disease have full access to the accelerated approval pathway
Here is a link to the full text for the Creating Hope Act which will be crucial to pediatric rare diseases. 
    I didn't get to see Dr. Kakkis presentation at LDN World, so I watched his YouTube material.  So you don't have to search, I put them the right here for you.  Check them out, it only takes 15 minutes.  They were music to my ears!

    Sunday, February 13, 2011

    Problems and the Law of Expandablity

    Problems will expand to fill all the space we give them.  No matter how bad things get, we have to contain them.

    It can be easy to look at the challenges we face and feel sorry for ourselves.  We all do it sometimes.  Heck, these days I look back on the things I worried about before my son's diagnosis and realized that I worried about many things that just didn't matter, silly stuff.  I realize now that our fears, anxieties and angers always expand to fill all the space that we give them.

    If you are an engineer or scientist, you are familiar with property of expandability of gases.  By definition, a gas always expands to fill its entire container.  Problems are the same way.  I have a feeling that  we are all hardwired to worry a certain amount; that amount might be big or small but not always related to the size of our actual problems.

    The moral of the story here is that do our best to put our problems in the smallest possible container we can in our lives.  Unconstrained, those problems will consume the entirety of our being.

    We can always look at our situation and say NOW I have real problems.  I still haven't learned my lesson because I am tempted to do that even now. 

    My son is three years old and he has been diagnosed with a fatal genetic disorder called Sanfilippo Syndrome.  We have met many new friends in the last month that are enduring the same agony that we face.  Many have it worse.  They have multiple children that have inherited the same genetic defect.

    Reed Visting Aziza at School

    Thinking more deeply, we are are truly lucky.  Our beautiful daughter Aziza is unaffected.  She is a wonderful sister and has always been so giving to her little brother.  We have always known that he was a demanding child, one that consumed a disproportionate amount of our attention.

    This awful disease that is damaging Reed's brain will teach her so many lessons.  Maybe I should learn more from her.  I should learn to savor every moment the way she does.

    If you want to real a truly inspiring message, check out Simon Ibell's web site.  He is an adult Hunter Syndrome patient.  Reading his material and talking to him over the last month has help me keep things in perspective.

    "To laugh is to risk appearing the fool. To weep is to risk appearing sentimental. To reach out for another is to risk exposing our true self. To place our ideas-our dreams-before the crowd is to risk loss. To love is to risk not being loved in return. To hope is to risk despair. To try is to risk failure. To live is to risk dying." ~Anonymous

    Wednesday, February 9, 2011

    How to set Team Sanfilippo as Your Ebay Fave

    For tonight's installment on the blog, I am going to explain how to set Team Sanfilippo as a favorite charity in Ebay.   If you follow all the steps in tonight's blog, it should take more than 5 minutes and cost you nothing. What it will do is get you all set up to donate in Ebay when you are ready.  No commitment.  How is that for a sales job?

    I won't rehash my previous blog introducing the idea but will just touch on why that is a good thing.  Ebay Giving Works allows you to sell items on Ebay and donate the proceeds.  By donating some or all of the sales proceeds for your item, Ebay will:
    • Waive some or all of the listing fees (pro-rated by your donation percentage)
    • Track your online donations (including cash) and provide you a year-end tax summary
    • Give your item extra visibility, helping it sell more easily and for a higher price
    All of that sounds great, but where how do you do it?

    You get started here:

    Team Sanfilippo Ebay Store Page

    If you click that link, you should see something like this:

    The first thing you need to do is make sure that Team Sanfilippo is saved as a "favorite" charity.  That will make it easy for you to select Team Sanfilippo as the recipient of your donation when you list an item.  I know everyone is really busy but...

    The one item that I ask as a favor is that tonight you simply do this one easy step.  I am putting all this effort into the blog and all I am asking for is a click.  Show me some love people!!!

    You will need your Ebay user id and password handy because it will ask you to login.

    Click here:

    Click here to add Team Sanfilippo to your "Favorite" Non-profits on Ebay

     If all went correctly, you should see a screen like this:

    Horray! We are your favorite!

    If you got this far, then awesome!  You are set to be a charitable giver on Ebay!  Now, let's list an actual item.  I will show you how to do that in the next installation but that can wait one day at least.

    Have problems following these steps?  Post a comment and we will get you some help!

    Thanks for reading,  


    Want to pitch in right away?  Click the donate button on the top right to donate to Team Sanfilippo through Paypal. 

    Previous Post: Why donating through Ebay is so awesome
    Next Post in the Series: How do I actually sell an item for charity?

    BTW, big shout out to my friends in the MPS III community.  Their "Hope Love Cure" videos have been so moving for me.  You can check them out on YouTube by searching for Hope, Love, Cure. 

    I would like to share a few with you.

    This is Jonah, this shows you what an early MPS III patient looks like:

    These are our friends Hunter and Ciara:

    No one should have to live like this.  Take a moment and do just a little to help these kids.

    BTW, here are a couple of short videos of my son Reed:

    Reed jumping on the trampoline with a sister a couple of months ago.  Before we got his diagnosis:

    Here is Reed being a funny guy:

    Tuesday, February 8, 2011

    Good Searching for a cure

    In fund raising, every dollar counts.  To find the cure for our children we need every bit of help we can get.  We need to ask, "What could I be doing slightly differently to make a difference?"  Tonight's post falls into that category.

    Since you are reading this blog I assume you use the Internet,  Everyone that uses the Internet searches for stuff, right?  Yahoo!, Google, Bing, etc.  You know how those companies raise money?  They do it by selling advertisement.  Good Search does the same thing with a small twist.  They will share a fraction of the advertisement with a non-profit of your choice.

    Here is the key, in the box below where it says "Who do you GoodSearch for?" you need to put "Team Sanfilippo Foundation"  Given that that's what I care about, I almost forgot to say that.  Seems obvious but I ain't takin' no chances!!

    So, just set your home page to Good Search and search away!!!  Is it a good search engine?  Good Search is powered by Yahoo! so the search technology is top notch.

    How much can we make?  Playing around with it a bit, I think that each search earns your favorite non-profit about $0.01 - not a lot but it adds up.  Most of us probably do about 10 searches (at least)  a day, if we had 2000  Good Search users that 20,000 searches per day or $200 per day or $72,800 per year.  Now we are talking real cash people!!!!

    So how can we make it even easier?  Use the Good Search tool bar, that's how!  With the tool bar,  doing a Good Search is even easier.

    So, instead of saying "Google that for me" or "look it up for me on Yahoo!" - you need to ask your friends to "Good Search for ..." whatever you are looking for. Do it and ask everyone you know to do it.  Heck you can point them to this blog if you like :).

    BTW, you can earn ever more by shopping with Good Shop.  Next time you plan to buy online, go to Good Shop and see if your store is listed.  For example, the Apple Store donates 1%.  Did you plan to buy Junior a new iPad?  Well, that could be $5 toward an MPS 3 cure right there!

    To get the donation, click the link for your store in Good Shop and you will see its coupons.  Here is what you would see for Best Buy, for example.  To get the donation, just click the shop now button.  that will take you to the Best Buy store where you would shop just like normal. It is actually kind of cool, they have coupons right there that can save you money too!  It is win>>win>>win - love it when a plan comes together.

    See how easy that was??  You didn't have to give up that dream of owning the PS3 in order to save the world?

    I am not totally sure, but I think that if you have the tool bar installed, it will automatically recognize when you shop at a store that donates.  Can someone please confirm in the comments?

    Funny Sidenote: This blog is powered by Google and it won't let me upload any images that show screen shots from Good Search.  Wow!

    Ebay Giving Works: Clear your clutter, cure some kids, save on taxes

    Okay, let's admit it.  We all have a ton of junk in our house that is just taking up space.  Instead of just letting that junk clutter our house, what if we could do something useful with it?  Team Sanfilippo has now teamed up with Ebay to create an online store.  Instead of selling your stuff on Ebay and donating the money to a non-profit, Ebay will now let you designate a non-profit as the recipient of all or part of your sales why proceeds.  Better yet, by allowing Ebay to donate the money, Ebay will waive almost all of the listing fees.

    With Ebay and Team Sanfilippo you can turn:


    You see, the money from your donated items goes to cure Sanfilippo Syndrome, a deadly childhood disease.

    So, why do it this way?  What are the benefits?

    Here are just a few:

    • Ebay will track your donations (cash and proceeds from sales) and send you a year end summary for your tax records
    • You get a cool little logo to go beside your sale item and special visibility which helps your item sell
    • Ebay waives the fees associated with selling online, so more money goes to Team Sanfilippo

    So how do you get started?  You can start by visiting our online store:

    Team Sanfilippo Ebay Store

    Here is more info for sellers:

    How to sell using Ebay giving works

    So what are you waiting for?  Get rid of some junk today and help cure our kids!


    Monday, February 7, 2011

    What is the point of this blog?

    About Me
    My name is Roy Zeighami.  My son Reed, born in 2007, was recently diagnosed with MPS III or Sanfilippo Syndrome.    It is a rare genetic nuerodegenerative disease and its impact is catastrophic.  Kids with MPS III die before their second decade of life.  We don't accept that fate.

    This is a picture of Reed and me hanging out on the
    swings in Stockholm
    We have teamed up with Team Sanfilippo to battle this disease.  In this blog, I am going to share my ideas about how we can all pitch in to help.

    Want to do something small today?  You can help and it won't cost you a penny.  Just use as your search enginer and specify "Team Sanfilippo Foundation".  Every search you do will earn one penny to help sick kids like my son.  You can learn more at my blog post here

    Next time you sell on Ebay, you can also specify that you would like to donate a fraction of the proceeds to Team Sanfilippo.  You get a break on your eBay fees and a tax receipt.  How awesome is that?