|December Holiday Newsletter 2010|
| Happy Holidays to all!!|
We have had a busy and exciting year in 2010.
~We received 3 research proposals for funding and granted one to Dr. Paul DeFiguierdo for $65,000 for each of 2 years; ~co-hosted a fabulous family conference with Camp Sunshine in Casco, Maine;
~implemented a Fundraising challenge and have raised over $60,000 at this time - almost enough for the funding of a SDSF research grant;
~received news about the completion of the SDS Consensus Guidelines by the International Medical Advisory Board which are being prepared for publication now and will be available to SDSF for printing and sharing in the new year;
~been accepted by the prestigious New York Academy of Sciences for the 6th SDS Scientific Congress (the doctor committee has been accepted. It is a medical meeting and not organized by laypeople like us at SDSF);
~collaborated with the Severe Chronic Neutropenia International Registry who generously represented us at their booth at the American Society of Hematologists conference that typically hosts 25,000 doctors and scientists.
So, everyone please have a wonderful rest of the year. I will be sending out another email in the beginning of January to announce the winner of the fundraising challenge.
May you find peace, happiness and health to carry with you into 2011.
Blair Van Brunt, President SDSF
|ONE LAST DONATION IN 2010??|
|There is still time for you to win the prizes for the most funds donated! We have some folks who are currently in the lead but......you can do it!! How about sending out an email to your extended family with the SDSF paypal link
in it and ask for a year-end donation? They can easily donate without having to lift a finger! Or how about buying some of the rubber SDS bracelets and giving them as gifts? Stocking stuffers?? New Year's Eve party favors? We'll ship them overnight if needed.
thanks for thinking about financially supporting SDSF!
| Article Headline |
FATIGUE IN BONE MARROW FAILURE PATIENTS
(This article has been reprinted with permission from the Aplastic Anemia & Myeldysplastic Syndrome International Foundation. Although it discusses fatigue in relation to AA and MDS, many bone marrow failure syndromes can relate to all that is written here and thus, SDSF has determined that this is an appropriate article for our community)
Feeling tired? Don't have that same get up and go? You are not alone. Most patients who are diagnosed with a bone marrow failure disease say they experience fatigue. In fact, one recent study reported that more than 90 percent of patients with MDS experience excessive fatigue.
The fatigue experienced by patients often goes well beyond just being tired. It is described by one expert as a persistent sense of physical, emotional, and/or cognitive tiredness, or exhaustion that is not related to recent activity and that interferes with the ability to function normally.
Unfortunately, fatigue in patients with bone marrow failure diseases and cancer often goes unreported. Several fears and misconceptions contribute to this lack of reporting, including the following:
- Hesitancy to report fatigue for fear of not receiving maximum treatment dosages
- Belief that fatigue is an expected symptom that is untreatable and that you should cope with it
- Concern that you will be perceived as a "complainer"
- Fear that it is a sign of recurrent or advancing disease
Doctors don't know exactly what causes excessive fatigue in patients, but they do have some ideas. Some think that it is caused by the abnormal secretion of substances that impair metabolism or affect normal muscle function. Other causes may include:
- Chemotherapy and other medications and treatments
- Sleep disturbances
- Psychological factors such as depression or anxiety
- Poor or insufficient nutrition (nutritional needs can change depending on the disease and current treatments)
- Hormonal imbalances
- Other illnesses such as uncontrolled diabetes
Fatigue is a real condition for patients with bone marrow failure diseases; patients need support and help. There are interventions that can help improve quality of life and reduce fatigue. Here are a few things to consider:
- Be proactive. Tell your doctor about your fatigue and request an evaluation.
- If you are not sleeping well, ask your doctor about sleep therapy.
- Conserve your energy. Set priorities, pace yourself, delegate tasks to others, and schedule activities at times of the day when you have the most energy.
- Consider starting an exercise program. There is a strong body of research showing that, at least for cancer patients, moderate regular exercise decreases fatigue, emotional distress and sleep disturbances, and increases functional quality of life. Never start an exercise program without checking with your doctor first.
- If you have other coexisting health conditions or are suffering from daily pain, make sure you see a doctor and mange these effectively.
- Have an exit plan or backup plan when you attend an activity or gathering that will allow you to leave easily and quickly if you become too tired.
- Consider medications. Certain stimulants, antidepressants, and steroids can help. Talk to your doctor about what may be right for you.
It is important to consult with your treating physician before beginning an exercise program, changing your diet, or taking any over-the-counter medications or dietary supplement.
For more information on managing fatigue, view their Webinar, "Managing fatigue in bone marrow failure diseases"
|SDSF Important Links:|
| Dr. Tarek Elghetany, a researcher who has been working on SDS for the last 12 years to determine how, when and why SDS can morph in to leukemia, has recently moved to Texas Children's Hospital, which is a teaching hospital affiliated with Baylor College of Medicine in Houston. His research is being coordinated with that of the bone marrow failure research group in Houston. He is in the process of getting hospital approval to continue his research at this new facility and updating his patient consent forms. The process is expected to be completed in the next few weeks and an update will be published in the next newsletter. Please wait until the next notice before sending any samples to him.
(This is repeat flu vaccine information from last newsletter but thought that it was important to include in this newsletter too)
FLU VACCINE INFORMATION
WITH REGARDS TO SDS
The 2010/2011 flu shot will provide protection against the H1N1, H3N2 (A) and B flu viruses. According to the CDC, people of any age with certain chronic medical conditions should get the flu vaccine but this is certainly a decision that you are your doctor can make together. There are some people who should not get a flu vaccine without first consulting a physician. These include:
ˇ SDS Patients whose blood counts are very abnormal compared to their usual counts
ˇ SDS patients who are on some sort of steroid
ˇ-People who have a severe allergy to chicken eggs.
ˇ-People who have had a severe reaction to an influenza vaccination.
- People who developed Guillain-Barré syndrome (GBS) within 6 weeks of getting an influenza vaccine.
ˇ-Children less than 6 months of age (influenza vaccine is not approved for this age group), and
ˇ-People who have a moderate-to-severe illness with a fever (they should wait until they recover to get vaccinated.)
It has been advised to our SDS community to get shots only. The nasal spray is a live, attenuated virus and should only be given to healthy people between the ages of 2-49 years of age. One of our Medical Advisory Board members has recommended that no one in the household should get the live attenuated virus if someone who also resides in the household may be immunosuppressed. Please consult your doctor and check out the CDC web site for more info on the 2010-2011 season.
|A Belated Camp Sunshine Article by Chris Garfield, past young adult contributor|
|Chris Garfield, Jon Wall|
Think summer camp is just for young kids? Well you might just want to re-think that!
This past summer I had the privilege of attending SDS week at Camp Sunshine in Maine. It was my first time attending and I wasn't sure what to expect. I knew that there would be lots of activities for the younger kids, but I figured at age 23 I would just take advantage of the medical sessions and enjoy the outdoors. I quickly found that I was under-estimating the staff and vision of Camp Sunshine. As soon as we arrived there was a welcoming session that let me meet the other young adults at camp - and to my surprise there were many! Not only were we welcomed into the medical sessions to learn about the research and advances in treatment, but there were special sessions set up to let us mentor the younger children. In addition, the staff went out of their way to ensure that we were included in the challenge activities as well.
For me personally, the week had two definite highpoints. The first was simply being able to meet other young adults my age with SDS and having someone to talk to about living with the different aspects of the disease. It was definitely eye-opening hearing the similarities and differences between our experiences from disease symptoms to bone marrow biopsies.
It was also a great opportunity to be able to exchange ideas about how we will manage our SDS issues now that we are older and in college or out on our own. The second highpoint was the opportunity to share our experiences with the younger children and to help them see that SDS doesn't define who they are, it is simply just one piece of their whole being.
All in all, camp was an amazing experience that I am so glad that I was able to take advantage of, an experience that left me with wonderful memories and many new friends. If you have an SDSer, young or old, that hasn't gone to camp - start planning now to attend the next SDS week to be held in the summer of 2012!
| You Can Help Bring National Disease Day To Your State|
| NATIONAL RARE DISEASE DAY February 28, 2011|
"Alone We Are Rare, Together We Are Strong"
Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009 EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States and in turn, NORD asked SDSF to be its partner - which we accepted wholeheartedly! Now, the concept is spreading around the world. In February of 2010, 46 countries participated. This year NORD invites patients and family members to help create a video dictionary of rare diseases. The goal of the project is to educate the public through the stories of real people. We hope to cover as many of the nearly 7,000 rare diseases as possible. Check out the Rare Disease Day web site for information on creating a video.
NORD is trying to get each state to have a formal proclamation of National rare Disease Day and here is how you can help them achieve this:
Write Your Governor
Proclamations supporting Rare Disease Day were issued in 40 states in 2010. 2 states were added to the ranks thanks to 2 SDSF supporters, a researcher who we have given a grant to in Utah and a mom from New Jersey. Requests for such proclamations must be made by someone (anyone!) living in the state. NORD and SDSF is grateful to its Partners for all their hard work in getting these proclamations last year and you can help get your state involved for 2011!!
Check your state's website or call your governor's office to find out how to submit a request for a proclamation.
This year we would like to encourage Governors to make "forever proclamations" to designate the last day in February every year Rare Disease Day. Please click here to link you to the Rare Disease Day web site that has instructions on how to contact your governor or state legislature.
If you do get a proclamation, please let us know so we can let our SDSF community know!
|Another Belated but Interesting Article About a Registry of Registries by Donna Garfield|
In January of 2010 the SDSF board supported Donna Garfield, an SDSF Board Member, in attending a conference focused on uniting rare diseases through the development of global rare disease registry (basically a registry of registries) hosted by the NIH Office of Rare Diseases. The objective of the conference was to initiate discussions between those rare diseases already supporting a registry (like SDS), those rare disease not supported by a registry and for individuals or support groups looking to belong to a registry. The ultimate objective was to develop an overarching registry listing of rare disease registries and to define a common registry infrastructure so that sanitized registry data could be shared to facilitate research and encourage collaboration between researchers.
The conference was well attended with a wide variety of attendees ranging from research staff, care providers, and rare disease research and support groups to patients and their families. In addition, there was also support personal from NORD and technology companies. All in all about 250 people attended (with an additional 100 or so on the waitlist.)
The sessions covered a wide range of topics covering standards, informatics, technology, biospecimens, biorepositories, clinical research, disease management, and bioethical and legal issues for clinical studies. In addition there were breakout sessions focused on standardizing vocabulary and terminology, Patient Participation/outreach activities/patient advocacy, clinical trials/research studies and bioethical and legal issues.
The two day conference ended with the development of several workgroups to continue the work started in the breakout sessions. Although this work is currently in its infancy, it is exciting to see research proponents working together to make their work more efficient and collaborative.
|ONGOING FUN FUNDRAISING IDEAS |
In an effort to increase awareness of Shwachman Diamond Syndrome and fund ongoing research and family support I am 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 me an email letting me 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:
127 Western Ave,
Sherborn, MA 01770
If the purchase is made in honor of a particular person, please let us know so that we can note it in the next newsletter.
For more information contact:
Donna Garfield, SDSF Board member
RECYCLE YOUR OLD CELL PHONES by Joan Mowery
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 make sure to put the SDSF return address on the shipping label.
Shwachman-Diamond Syndrome Foundation
127 Western Ave.
Sherborn, MA 01770
This is easy-has no cost to you--and most importantly will help SDSF continue it's work to help our kids.
PLEASE START THIS CAMPAIGN TODAY. Please contact Joan Mowery with questions
SDS Rubber Bracelets can be bought through SDSF
and sold at any of these events below. We sell them for 10 @$25.00 and you can re-sell for whatever you feel your market will bear. If you need a large quantity, we will negotiate the price depending on the number needed.
Or how about buying a beautiful crystal bracelet with an SDS charm on it
for a gift? There are many colors to choose from and they are handmade by a mom who served on the board of directors for many years and is also a mom of 2 SDS girls. $30-40 depending on what you choose.
Alumni Reunions - sell SDSF Rubber or Crystal bracelets
Art Exhibit - of locals or kids - charge admission/sell tickets
Auction/Silent Auction -get donated items from friends, family and local businesses.
Balloon Bouquets - buy wholesale, sell retail
Bazaar And Fair - charge for admission and food and drink
Block Party - sell rubber and crystal bracelets
Box Lunches -make them yourself and sell at retail
Breakfasts (Pancake,International Food, etc) - sell admissions or single meal
Car Wash - get volunteer students, ask fire dept for access to water
Celebrity Lunch Or Dinner -charge admission
Christmas Craft Sale
Christmas Wish Tree
Craft fair - charge admission and ask each vendor to donate a portion of their proceeds
College Final Exam Survival Kits -sell to friends/family
Community Festival Consignment Items Sale
Cookoff Contests (Dad& Daughter, etc.) - charge entry fee
Easter Gift Baskets for sale
Fashion Show Luncheon
Father/Daughter Dance -
Flower Sale -- Mother's Day
Game Contest Marathon
Guess Beans In Jar Count
Home Tours - charge admission
International Foods Sampling -charge admission
Poker Game- charge entry fee and re-supply of chips. Winner can donate winnings to SDSF
Pet Shows - charge admission and get donated prizes
Supper With Ticket Sale (Chili, Hamburger,Spaghetti, Pizza, Barbecue, etc.)
Ticket Sales Of Door Prizes At Special Events
Tournaments/Events (golf, walk/run event,tennis, softball, chess, etc.)-see separate article
Used Book Sale
Wine And Cheese Tasting's - charge admission and donate portion of sales of wine to SDSF
Most of the events that need to charge admission/sell tickets can be priced by finding out what other charities charge for fundraising events in your area.
|CAN YOU SEND IN TISSUE? BLOOD? PATIENT INFORMATION? |
|SDSF has a long history of many families participating in different studies that researchers have proposed and are needing tissue, blood or information of an affected SDS patient. Click here to see what the current needs are|
THANK YOU FOR YOUR DONATIONS (October 14, 2010 - December 17, 2010)
IBM Employee Services Center
Rose & Frank Canonico
IBM Employee Services
CFC of Louisville, KY
In Honor of Gracie VanBrunt - Gracie Fund, Mac Fund, Heffernan family
In Honor of Logan Stone - Thomas & Rebecca McEwen
In Honor of Logan Stone - Susan Utz
In Honor of Kelsey & Emily Jenuwine - Diana & David Murphy
In Honor of Chris Garfield - Stefanie Holloway
In Honor of Michelle Mowery - Little Pleasures Foods
In Honor of Gavin Miller - Amber Sanchez
In Honor of Erin Johnson - Erin Johnson
In Honor of Kaitlyn Bright - Nana (Michele) & Pops (Noson) Fontenot
In Memory of Melanie H. Smailus - Travis & James Coleman
In Memory of Shirley Grawe - Paul & Joan Reuter
In Memory of Shirley Grawe - Jason & Michelle Longworth
In Memory of Shirley Grawe - Sharon & James Jansen
In Memory of Shirley Grawe - Richard & Linda Stoecklin
In Memory of Shirley Grawe - Marlene & Donald West
In Memory of Shirley Grawe - Linda Drapp
In Memory of Shirley Grawe - Sheila Milligan
In Memory of Shirley Grawe - Daren Bross
WELCOME NEW SDS FAMILIES!!
Oak Creek, WI
Eagle River, AK
Mountain Home, AR
Black Hawk, CO
St. Charlie, IL
Chula Vista, CA
| Shwachman-Diamond Syndrome Foundation |
FOUNDER: Joan Mowery 1994
BOARD OF DIRECTORS
Blair Van Brunt - President
Bryan Sample - Treasurer
Theresa Henle - Program Coordinator
Donna Garfield - Newsletter
Other Amazing Leaders
Joan Mowery - Family Follow Up
Staci Bishop - Anna Angel Basket Coordinator
Kim McDowell - Administrative Assistant
Ann Bodewes Stephens, Herzog Crebs
BOOKEEPER: Letitia Cote, Quickbooks Advanced Certified Proadvisor
Shwachman Diamond Syndrome Foundation
127 Western Avenue
Sherborn, MA 01770