October Newsletter 2014

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My son has settled into the daily school routine, the leaves are beginning to change color, and I am reflecting about the summer and planning ahead for winter. This summer brought many new families together at Camp Sunshine in Casco, ME, and reunited returning families. It was wonderful to see how much the children have changed, and grown in two years. And I was amazed at the accomplishments of the teens and adult patients who attended. I was able to spend only a little time with each family and I am honored to have spent that time with you. You are all wonderful advocates for your children. We are armed with more invaluable information to include in our arsenal of tools to help care for our patients. This year's family conference had 9 specialists, the most we've ever had. The weather was ever changing, and so were the doctors' flights. Dr. Liu of North Shore- LIJ is so devoted to researching SDS and helping our families, that his flight was cancelled and rescheduled so many times, he arrived, presented, and departed all within a few hours in one day. The presentations and one on one sessions were very informative. The doctors were very generous with their time that they devoted to each family.


We are looking forward to the next family conference hopefully in the summer of 2016. There was a lot of interest in regional gatherings for the upcoming summer. If you have any ideas or you would like to help scout out a location, please let me know.

Two members of new families who attended Camp have expressed interest in helping SDSF. I would like to introduce new Board members Christian

Del Re, communications chair, and Stephanie Gregoretti, family support. Christian is a teacher from Staten Island, and Stephanie is bright, resourceful mother from Long Island. I am excited to see our foundation grow and looking forward to working with them.

We have been fortunate to have had several successful fundraisers this summer. The Price Family hosted their 1st golf tournament Swinging for Shwachman, and banquet in North Carolina. They already have the date set for next summer for their 2nd annual fundraiser. A big thank you goes out to Coach Ruffin McNeil of the East Carolina State football team for supporting the Price's and all SDS families. Christian Del Re and his wife Gina hosted a FUNdraiser Bouncing for SDS last month on Staten Island. Not only was there bouncing for the little ones, a raffle for donated themed baskets kept adults occupied. Q3contracting from Colorado surprised us with a wonderful donation from their company golf fundraiser.


Thank you to all our fund raisers. We need your support so we can continue to provide family support and fund research. We are grateful for all the families continued fundraising efforts and we will help you sponsor your fundraising events. Please contact us if you need help planning your event.


Our funds are also used in education and spreading awareness of SDS. This December SDSF will attend the American Society of Hematologists (ASH) Conference in San Francisco. We have the opportunity to connect with 20,000 hematologists and researchers from all around the word and this gives us an unprecedented opportunity to speak to them personally about SDS and spread the word. We are looking forward to spreading awareness along with a few local families who have volunteered to help at the conference.


SDSF is building a new website. This will include more concise and upto date information, a modern look, and will be easier to maintain and add content. What would you like to see included in the site or in our next newsletter? Would you like to see your patient's picture on the website? We are looking for new pictures. Send them or write to us at



Wishing everyone well in the upcoming season. Don't forget your flu shots.




Christine James


Research Grant Recipient
Announcement and Project Summary


SDSF is pleased to announce that a 2 year, $70,000.00 Research Grant has been awarded to Drs. Johnson H. Liu and Hengjun Chao.  



SBDS Gene Expression Levels and Hematopoietic Defect in Shwachman-Diamond Syndrome: Groundwork and Application for Gene Therapy


Dr. Johnson M. Liu and Dr. Hengjun Chao


Mutations in the Shwachman-Bodian-Diamond syndrome (SBDS) gene are found in the majority of Shwachman-Diamond syndrome (SDS) patients. SBDS gene therapy, that is, transfer of the normal SBDS gene into patients' cells, may be a potentially effective way to treat SDS. However, thus far, SBDS gene therapy has not been studied. First, it is currently unknown if there is a proportional relationship between the levels of SBDS and the defect in blood cell production. Also, we do not know the minimum amount of SBDS that is needed to correct SDS. It is possible that too much SBDS may be harmful or even lead to cancer. Our project is aimed at finding out if there is a correlation between the amount of SBDS and the defect in blood production, using a relevant mouse model. The studies are meant to set up the groundwork to fulfill our long-term goal to develop effective and safe gene therapy for SDS patients.


Family Conference 2014
  First Timers at Camp Sunshine

by Christian Del R


My family attended Camp Sunshine this past July for the first time. Our son, Anthony, was diagnosed with Shwachman-Diamond Syndrome when he was eight months old, in October 2012; he is now 2 � years old. My wife and I cannot stop talking about how great this organization is because of what they do for families of children with life threatening illnesses. Each week the camp hosts a week for a medical condition and the children in the families go to camp for the week. We are in debt to the Shwachman Diamond Foundation (http://shwachman-diamond.org). Our week in Maine was at no cost to us, which I cannot believe. From the moment we arrived, we were treated with care and concern. The volunteers met us at our car and helped us unload our luggage and even watched Anthony as he slept in the car. Camp Sunshine was the first time we met another family of a child with Shwachman-Diamond Syndrome and this was such an eye opening experience for us. Or oldest son, Nicholas, fit right in immediately and loved going to camp each day. The volunteers who led his group really connected with him and Nicholas wanted to go to camp all day, everyday. At Camp, this was the first time Gina and I have ever left Anthony in a group setting with other kids and we were not sure how he would react, but after the first afternoon, he was hooked. He loved seeing Sunny and Chip Chip and going for rides in the wagon in the Tot Lot. I cannot say enough how great the volunteers were with them.


For my wife and me, our time at camp was emotionally draining. We know we have a handle on Anthony and his SDS I knew all the issues involved with SDS, but even for me, to sit in on conferences with the top doctors in the field who spoke about bone marrow failure and transplants, it was really overwhelming. Attending the talks with the doctors really helped us fully understand the basics of SDS and helped us understand what Anthony is going through. We really valued the one on one time with the doctors so we could ask them specific questions about Anthony's medical records and issues he is having. One of the hardest parts of the week were the times in Nancy's Place, where the parents of children, and teens themselves, with SDS, came together to share stories, learn from one another, and talk about our experiences and the future of living with SDS. The conversations were difficult but the advice and empathy in the room was real and compassionate.


Even though this was a draining week, looking at our kids having the time of their lives at a masquerade party, participating in a talent show, and making a wish boat where they expressed a hope for the upcoming year (even if Nicholas' wish was for a Teenage Mutant Ninja Turtle toy), this was our serenity. My wife and I connected with many families and these new friendships hopefully will be a way to have people to talk with who understand what we are going through when Anthony's health is not at its best, and to connect with when times are good. It gave us a sense of peace to watch all the children at all meal times with their enzymes out on the table and when the volunteers came to get parents during group sessions so their children could take their pills with their snacks, it was the norm.


We made connections that are so important to allowing us to best help Anthony, and we are so grateful. Thank you Camp Sunshine and SDSF for everything.
 Family Conference 2014 - Camp Sunshine, Casco, ME

Patients Camp Sunshine 2014
Brave SDS patients of all ages
Karaoke night.  Do you recognize anyone?
drs at Camp 2014
Our amazing specialists!

Wish Boat Ceremony
Camp Sunshine

School Support
.IEP vs 504  
Information provided by:
Maura Donahue
School Psychologist
Similarities of 504 and an IEP
Both include accommodations and modifications
Can provide related serviced such as OT, PT, and speech
Allow the student to keep the same placement and stay in the regular general classroom
Include safeguards protecting the rights of the child:
Parental notices of evaluation or placement
Parental review of records
Impartial hearing for appeal



Is a Civil Rights Act which uses accommodations to implement the plan
Is an Education Act which provides specialized instruction and related services to implement the law

Is only funded through local funds
Is funded through state, federal, and local funding

All abilities are potentially eligible

Has only 13 disability categories under which one may be found eligible

Provides less accountability, but provides assurance of equal access to public educationRequires documentation of measurable progress towards goals
Don't worry, there ARE supports available!
"You may not be an expert about special education, but you are an expert about your child"
State and Federal laws have been enacted to ensure that the rights of children with disabilities and their parents are protected!
These laws ensure that children with disabilities have a free, appropriate, public education available to them, which emphasizes supports and servides designed to meet their unique learning needs.
Medical Article
Influenza Shot vs Mist

In general, most physicians recommend that SDS patients should receive the influenza vaccine. The usual vaccine that would be given is called an inactivated quadrivalent vaccine, and this does not have any live virus. People who have had a severe allergic reaction to any component of the vaccine, including egg protein, should not be given the vaccine. A final precaution is that SDS patients, who we know have a weak immune system, SHOULD NOT receive the live attenuated vaccine (which is called FluMist and is given by nasal spray).

Johnson Liu, MD 
Family Story

Living with Shwachman-Diamond Syndrome

                 by Joe Wall

Growing up with Shwachman-Diamond Syndrome (SDS), I have dealt with a lot of infections: bronchitis, pneumonia, skin infections, cellulitis, folliculitis, mastoiditis, ear infections, and MRSA.  My ANC has always been between 200 and 400 until the last couple years, now it is usually anywhere from 500 to 1000.  All these infections have lead to a significant hearing loss and when I was in kindergarten and first grade I had problems with reading.  By the third grade, I ended up with an IEP for reading help.  This really frustrated me but I learned to deal with my frustration by playing sports.  I played soccer (hated it), baseball, hockey (loved them), and wrestling.  In hockey, I was always the smallest kid on the ice and was targeted every time until I learned to defend myself.  Wrestling helped me gain muscle mass and it led to my love of weight lifting.  When choosing a college, I had make sure the institution had a gym, as I knew I needed to work out so I could relieve some of the tension/stress of taking tests and trying to keep up with my school work.  Later on, I would use working out as a way to get focused (I had ADD) and that would get me back on track and better manage my time.  In my prime, I would turn some heads while at gym, but currently I'm trying to get back to where I used to be while playing sports. I have found that if the workout is too intense for me, it takes me a very long time to recover so I try to do a small workout here and there.


            As an adult, I find dating is hard, partly because I haven't found the right girl yet.  One serious note though, a few times while dating, I had my red SDS bracelet on and they would notice it and ask questions.  I didn't want to lie, but found when I explained what SDS was, they would basically "run away."  This would irritate me because before those conversations came up, everything seemed fine.  The other obstacle has been driving.  With my ADD and dyslexia, it was hard learning to drive as well as staying focused.  I overcame that simply from maturity and driving long distances.  At random times my dyslexia does come back but I have managed to control my ADD.


            I'm the perfect example of the phrase don't judge a book by its cover.  You can have a chronic illness and still live a normal successful life.  I believe this is possible because I am living proof of that.  I do not deny that I have SDS, I just don't let it control my life!  I am constantly reminded that I have SDS, but instead of worrying about the big picture, I try to take care of all the little things before they become a big problem.  The older I get, the more SDS stays in the background.  I still get skin infections and folliculitis pretty frequently, but I just have to try to take care of it right away.  I have found through experimenting that taking Epsom Salt baths are the best cure.  As an adult with SDS, I need to continue to be careful but also to be able to do what I want.  You can't plan life too far ahead because anything can happen in any situation at any time, just be prepared for the best as well as the worst. 

            I am not a cocky person but I have found that when dealing with a rare illness, a person has to force confidence in anything he does; no one knows what is going to happen.  So instead of throwing in the towel, attack the problem straight on.  The four people I look up to most (technically down to because they are all shorter than 5'2") are my mom, older sister, and two grandmothers.  My mom has been my biggest supporter and my number one fan; she's the president of The Joe Wall Fan Club!  My sister has stuck up for me in so many ways and I still like to get her opinions and feedback on anything that I do.  My Grandmothers are two of strongest women on the planet.  My Nana (my mom's mom) has been such a loving caring person, always putting others before herself and I strive to uphold those morals.  My Gram (my dad's mom) is the toughest person ever, always living life to the fullest; she is a stomach cancer survivor.  Every night at nine o'clock, she has a giant bowl of ice cream and a cup of coffee before she goes to bed.  Because of them, I am not worried about being short. I can still be tough at 5'6".


            Advice I have for parents of kids with SDS is to let them try to come off some of their medicine if they think they are ready and see what happens.  I found that I knew I didn't need my Creon anymore and I cut it down every week until I went to zero.  I would eat the same amount of food and found I didn't have any stomach issues but I still had to convince the doctors to come off the Creon at that time.  Antibiotics were a different story.  I stopped taking them every summer, but would end up with an ear infection or some kind of infection within two weeks and would have to go back on them.  I finally was able to come off antibiotics all together at age of 21.  I urge parents and others who have SDS to not call it a disease or a life threatening disease but simply a chronic illness that you will have for the rest of your life.  For me, it is so much nicer to hear and say chronic illness out loud.  Also, I have found that people treat me differently when I say I have a disease.  It is such a very negative word.


            My biggest advice to everyone is to find something you love and are passionate about and focus on that instead.  When you have something you love, all the negative things tend to disappear (at least in my case they have).  I have always loved art and cinema and graduated from college with a BFA in Fine Arts.  After college I performed an internship at a TV studio and it peaked my interest in filmmaking.  I want to be a filmmaker and I'm currently working with an independent filmmaker and I love it.  I am constantly learning new things, but most of all I am having fun in the process.  I am working to make this a career and a dream come true!   

Family Fundraiser
  Join the Frew Family for an evening of bowling!  
Saturday, November 15, 2014
Super Bowl
45100 Ford Rd. Canton, MI 48187
Erica and Rob have their hands full with 3 rambunctious boys.  Kyle is a supportive big brother to his younger twin brothers, Gavin and Ian.  Gavin has recently gone through a bone marrow transplant and is doing great! This amazing family wants to give back for all the support they are given for their 3 children with SDS.  If you are in the Canton area roll on over to Super Bowl and help
Strike Out SDS!


Board Member Introduction
Pam Miller    

Pamela Miller - Secretary


Hi, I'm Pam and I am mom to 3 non-genetic sdsers and 1 healthy child.

Our SDS journey started in July 2000 when Scott was born. He seemed to do well as a newborn, ate well and grew until he was around 6-9 mos old. At that time he went from 50% weight to less than 3%. His biggest problem seemed to just be PI related, but we didn't figure that out until he was 18 months old. Our GI at the time told us that even though Scott had undetectable levels of pancreatic enzymes, there was "No way he had SDS, it's too rare, I have never seen it." So as we all know, since something is rare, we couldn't possibly have it, especially an atypical presentation.

We battled through with the assumption that we had nothing genetic, and all was fine. Scott just had odd skin infections, repeated ear infections, constant viral stuff but nothing severe enough for anyone to take notice.

It wasn't until Scott was 3 yrs old and I was pregnant with Meagan, that we were finally told that "Yes" Scott did in fact have SDS. "But his blood is fine and you don't need to worry about that aspect of it." No need to see a hematologist.

Our daughter Meagan was born in Jan 2000, preemie but healthy. It wasn't until she was 3 years old that we started to get concerned with her health, but no one else seemed to be worried, she was growing much better than Scott, but she was constantly sick. It took until she was 7 years old to finally decide that she had odd immune defects. Low NK cells, some low proteins, didn't hold her vaccines, and was constantly getting viral infections that would turn into secondary bacterial infections. But again, no one seemed to worry, because she wasn't hospitalized for these infections.

Our fourth child, Jonathan was born in June 2005, by now we knew what we were looking for and when we had a random low blood count when he was 6 months old, we knew what we were facing. So I finally decided to fight for more monitoring of Scott and hopefully Jonathan too.

I called Cincinnati Children's Hematology department because I had heard that they were interested in nongenetic SDS kids. So I asked if they might want to see us. We left with bmb's scheduled for both boys. So our first bmb's were Aug of 2006. Scott was 6 and Jon just 14 months.

This summer, due to research being done through Cincinnati and Seattle, Meagan was diagnosed as having the same thing as the boys. We were told that they "found something" and Meagan needed to have a bmb right away. We are so blessed to have been part of the research through Seattle to get an answer for her since no one else really thought she had a problem.

Most of our issues with SDS stem from PI, short stature, osteoporosis, and frequent viral infections. The kids are not neutropenic. We also have our daily battles with ADHD, migraines, abdominal migraines, irritable bowel, fatigue and the eternal struggle with growth and weight gain. We do not have a typical presentation of SDS and have had our struggles to diagnosis.

I am excited to be a part of Shwachman-Diamond Syndrome Foundation. I hope to continue to help spread awareness and help families find comfort in the dark and scary days. Anything I can do to help another family find their way through this journey is important to me.



In This Issue
Important Links:

Medical Scientific Advisory Board

Regional Parent Contacts
Take a look to see who might be in your area and give a ring, get together, call for advice!


If you are already registered, please remember to send in annual updated medical records and fill out the annual questionnaire obtained from the Registry.

Dr. Akiko Shimamura, Seattle
Dr. Stella Davies
Dr. Kasiani Myers
Dr. David Dale

Registry Contact
Joan Moore
Call or email her to join registry, ask questions and discuss registry issues.
Phone: 513.636.8316
Fax: 206.543.3668

SDS Registry at the Fred Hutchinson Cancer Research Center
Main: 206-543-9749
Toll-free: 800-726-4463

Johanna Rommens, PhD
Monica Bessler MD PhD
Jeffrey Lipton MD

Dan Link MD
Soheil Meshinchi MD
Kathy Sakamoto MD
Sam Kocoshis MD

(appointed by the SDS Registry Advisory Committee)-email these reps with any questions or comments you may have to relay to the Registry

Matt Palmer PhD
Former member of the SDSF Board of Directors

Communicate with Other Families
Or for more public sharing with your friends and families of your SDS experience, like our official Facebook page! Feel free to upload pictures of your kids, families, stories, videos, anything!!

Join Our Mailing List
Ongoing Fun Fundraising Ideas
SDSF would like to encourage everyone to raise funds to support research and the Foundation. We have had families raise money through letter writing campaigns, school dances, corporate matching gifts through their employers, golf tournaments, physical competition events, Super Bowl parties and more.
For help in planning your next fundraiser contact our Fundraiser Chair, Ed Turkaly.

Here are a few examples:
Rubber Bracelets
We have NEW SDSF rubber bracelets. These are a perfect conversation starter about SDS. We would like everyone to have them and wear them. We would also like to suggest that you either give or sell them to everyone you know. Or give them to your family and friends and ask that they make a donation to SDSF. Or if you prefer, you make the donation and give them as gifts. Contact us at info@shwachman-diamond.org to order them.  
Letter Writing Campaign
Perhaps the easiest of all! Go to our website to see sample letters. You can mail/email to family/friends, business assocaites and include our Donate page link in the email for fast and easy giving.

Flash Drive Fundraiser
In her own effort to increase awareness of Shwachman Diamond Syndrome and to fund ongoing research and family support, Donna Garfield, is conducting a flash drive fundraiser. All funds raised will be donated to the Shwachman Diamond Syndrome foundation. The flash drives sell for $15.00 and are 2GB, the perfect size to hold family medical records, or schoolwork for your budding scholar. Order one for yourself, or many to resell!

To place an order simply send SDSF an email, info@shwachman-diamond.org, letting us know how many flashdrives you would like. Payment can be made through our donate button on the SDSF website.

You can also send a check to:
P.O. Box 40
Avon, NY 14414

Recycle Old Cellphones
How many old cellphones are lying around your house and your family, co-workers and friends' houses? We have a way that you can help the ecosystem and help SDSF at the same time. And we can all do it. It's an easy way that everyone can help raise money to support research and all of the other work SDSF does.....recycle cellphones. SDSF has been registered with www.recyclingfundraiser.com. Start a recycling campaign by contacting family, co-workers and friends. When you have collected the cellphones go to this company's website. They will give you instructions on how to download and print a FREE shipping label.

To make sure SDSF gets a check for your shipment, please put the SDSF return address on the shipping label.
Shwachman-Diamond Syndrome Foundation
P.O. Box 40
Avon, NY 14414
This is easy-has no cost to you--and most importantly will help SDSF continue it's work to help our kids.
Please contact Joan Mowery with questions.

On-line shopping
Do you shop on Amazon.com?  You can support SDSF by shopping at AmazonSmile.  Amazon donates 0.5% of the price of your eligible purchases to the charitable organization of your choice.  AmazonSmile is the same amazon you know.  Same products, same prices, same service.  Support SDSF by shopping at AmazonSmile.

Matching Grant Program
Does your employer have a matching grant program? Ask them to include SDSF in their Giving Program. You can also inquire if they will match your donation.  SDSF is in the Morgan Stanley Employee Giving Program database.

Thrivent Choice Dollars�directions can help Shwachman-Diamond Syndrome Foundation

Are you a member of Thrivent Financial who's eligible to direct Choice Dollars?

Choice Dollars charitable grant funds can make a world of difference to SDSF as we work together to support and educate families about SDS. By directing Choice Dollars, eligible Thrivent members recommend where they feel Thrivent should distribute a portion of its charitable grant funds. Directing Choice Dollars is easy. Simply go to Thrivent.com/thriventchoice to learn more and find program terms and conditions. Or call 800-847-4836 and say "Thrivent Choice" after the prompt.

If you have any questions and would like to contact the representative from SDSF about Thrivent contact Jenni Wachter at jenniwachter@hotmail.com.


Do you know someone that needs some encouragement?  Give them a gift that gives back.  With each purchase of a Bravelet $10 will be donated to SDSF.  These bracelets' and necklaces' mission is to help people to BE BRAVE.  Consider purchasing a Bravelet and help SDSF and a special someone.  https://www.bravelets.com/bravepage/shwachman-diamond-syndrome-foundation

Thank You For Your Donations
( June 26, 2014- September 30, 2014)
Johanna & A. Lloyd Owens,
B R D & Sons, Inc.  
Rose & Frank Canonico
Nicole Carpiniello
Jennifer Carpiniello
Deana Valiante
Steven Kilcrease
Kristen Krausen
Amanda McKenley
Dawn Marie Fountain
Amanda Feeney
Greg Bondarenko
Caroline Newell
Sherrie Speidel
Carol Ree
Vienna Lodge 1896  
United Way of Greater Rochester
Shwachman Diamond Project
In Honor of Michelle Mowery - The Mowery Family
In Honor of Roin Porrata - Diane Affinito, Maria & Anthony Porrata
In Honor of Wade Watcher - Jennifer Watcher
In Honor of Gavin Frew - Erica Frew
In Honor of Collin Brown - Richmond Rotary Club
In Honor of Marc Stumm - Arline Fleming, Lyneth & Douglas Stumm, Douglas & Anita Stumm
In Honor of Anthony Del Re - Christian Lillis, Peter Grieco, Florence Roca
In Honor of Carson Turkaly - Lora Baker
In Honor of Marissa Avroch - Corey Bryant, Scott Handelman, Dianne Moschetta
  In Honor of Jessica Bodron - Timothy & Jon Bodron
In Honor of Scott, Jonathan & Megan Miller - Edward Miller
In Honor of Keegan Brice - Kyle & Angie Brice
In Memory of Heather Pendergast - Thomas and Penelope Pendergast
In Memory of Lukas Solomon Fletcher - Randy & Maureen Squires, Courtney & Evan Westlake, Susan Creighton, Ronald & Barbara Jagodzinski, Carol Andrews, Gregory & Jamie Fletcher, Carol & Michael Tipsord, Margaret Renner, Ashley Till, Lisa Lyons
Swinging for Shwachman Golf Tournament Fundraiser
In Honor of Chilton Price
- Suddenlink Communications, Robert & Virginia Peterson, Brian Taylor, Christopher Moye, Ruffin McNeill LLC,  Linda Price, Taylor Brown, Larry & Alice Brown, Thomas Boyle, Joseph & Margaret Dooley, Johanna & A. Lloyd Owens, BRD & Sons, Inc., Doug Henry Ford, Inc., Harold & Tracey Robinson, Jonathan Partee, Tracey Minto, Adam Wells, Gina & Stephen Beaman, Bryan & Elizabeth Arp, Johnny Joyner, Phillip & Rebecca Price, Richad & Barbara Smith, Michelle & Jeffrey Piscorik, Douglas & Mary Sheppard, Jonathan & Patricia Gibson, Brock's Berries & Produce Inc., Michael McKee & Associates, Inc, Joe Pecheles Volkswagen Inc., Gregory Abeyounis, Mary & Robert Harward, Fonnie & Eddie Crabtree 
Welcome New SDS Families
Long Beach, CA
Orlando, FL
Cavetown, MD
Melvin, MI
Washington Court House, OH
Midland, TX
Kissimmee, FL
Ottumwa, IA
Greenville, NC
Marshfield, MO
Arlington, MA
Houston, TX
Vancover, Canada
South Wales, United Kingdom
Brussels, Belgium  
Shwachman-Diamond Syndrome Foundation
FOUNDER: Joan Mowery 1994


Christine James, President
Joan Mowery, Vice-President
Pamela Miller, Secretary
Bryan Sample, Treasurer
Ed Bickel, Creative Media Chair
Ed Turkaly, Fundraising Chair
Christian DelR�, Communications Chair
Stephanie Gregoretti, Board Member

Other Amazing Leaders
Joyce Wall - Anna Angel Basket Coordinator
Maura Donahue - Advisor to the Board

Kim McDowell - Administrative Assistant and Bookkeeper

ATTORNEY: Ann Bodewes Stephens, Herzog Crebs

Shwachman Diamond Syndrome Foundation | P.O. Box 40, Avon, NY 14414
888-825-SDSF (7373) | info@shwachman-diamond.org | shwachman-diamond.org

Copyright � 2013. Shwachman Diamond Syndrome Foundation. All Rights Reserved.