Posted by Kristal Louie on Mon, Jun 14, 2010 @ 01:15 AM
STUDY UPDATE
Due to all the hard work from our WONDERFUL participants, we have reached our goal. We are ready to begin the next phase of the study - performing genetic analysis of the samples in the lab..
We will be closing down the http://www.sbgenetics.org/ survey site at the end of the month. So if you know anyone who has expressed interest in the study but has not completed the survey they have a few weeks left.
For those who have completed the survey, but have not returned their saliva sample/consent, please send in your kits as soon as you can. We will be accepting the kits indefinitely, however depending on where the analysis is, not all of the samples received will be part of our initial analysis they may be used in validation of our results instead.
We are still offering EVERYONE the individual testing at the completion of the study if our analysis supports our theory. So please ensure to provide us with new contact information if you move or obtain a new phone number/email address.
From this point in the study onwards, we are unable to provide details regarding the results of the study until the completed project is published in a scientific journal. Our inability to discuss the results will likely be frustrating for many participants, especially those who are contemplating another pregnancy or have family members contemplating a pregnancy. The process of data analysis and publication can be lengthy as there are high standards for these in the scientific community. We hope to provide updates on where we are in the process to keep communication open with all participants.
You will still be able to reach us at 1.866.575.0110 or at support@sbgenetics.org
Any light that we can shed on the genetics of spina bifida is a direct result of your support. THANK YOU for all the time and effort you guys have invested in this study. We are truly grateful.
Sincerely,
Kristal & the SB Genetics Research Team
www.sbgenetics.org
support@sbgenetics.org
Posted by Kristal Louie on Fri, Apr 30, 2010 @ 06:39 PM
Giving Life - Moms with Spina Bifida
I recently read an encouraging article published November 2009 in Cerebrospinal Research. A group of researchers from Europe followed four women throughout their pregnancies and deliveries. Two of the mothers had shunts and neither had any problems throughout the study. Of the four, none experienced any significant problems other than one mother with urinary tract infections (which she had experienced prior to pregnancy as well). All of the infants were delivered successfully by elective cesarean section. Although this was a small study, with only 4 participants, the conclusions were quite positive.
After reading that article I decided to find out more. I was discouraged by the lack of recent data available. However I found an abstract in the September 2000 issue of Journal of Reproductive Medicine. Researchers from Australia completed a retrospective (that means after the fact) study on 17 women with spina bifida who had a total of 29 pregnancies. Similar findings were reported in that the only significant problems reported were recurrent urinary tract infections in women who previously had urinary tract infections and worsening of pre-existing pressure sores. Of the five women who participated that were wheelchair bound, four had cesarean sections. Of the 24 women who were independently mobile, 8 had cesarean sections. Other than minor post-operative complications, the pregnancies and deliveries were very successful.
I learned some very interesting and encouraging findings from the articles and I hope you are able come away with your own interpretation whether it is the same as mine or not.
Kristal
www.sbgenetics.org
support@sbgenetics.org
Posted by Kelly Sitts on Tue, Apr 27, 2010 @ 05:05 PM
Some of our participants had questions about the enrollment design of the study.
We are enrolling mothers of children with Spina Bifida and their children with Spina Bifida. Until recently we were only enrolling one child; however, due to recent developments we are now accepting all children with Spina Bifida of the mother enrolled. If you have already received your collection kits and would like to enroll an additional child, please contact us as support@sbgenetics.org.
Many participants also wonder why we are not analyzing the father's DNA. The answer is that even though we aren't collecting saliva from the fathers, we still can analyze their DNA that was transmitted to the child. We chose to enroll mothers rather than fathers because we need to know about the pregnancy. As long we have DNA from mothers and their children, we will be able to determine the genetic contribution of both parents.
www.sbgenetics.org
support@sbgenetics.org
Posted by Kristal Louie on Wed, Apr 14, 2010 @ 06:29 PM
Greatness
Somebody tipped me off to a great site. On the Children and Adults with Spina Bifida & Hydrocephalus site, they have a long list of people who have great accomplishments. These individuals either have spina bifida or a loved one with spina bifida. Why don't you check out the page to see how many names you recognize? If you know of someone who needs some encouragement maybe they can find a role model. Robert Hensel, an international poet & writer, completed a non-stop wheelie in his chair for over 6.178 miles !!!
One note it may not be suitable to view the page for the first time with young children. One of the featured famous people is the renowned female artist Frida Kahlo, who is rumored to have had spina bifida. One of Frida Kahlo's paintings is displayed that may not be appropriate for young eyes.
Kristal
www.sbgenetics.org
support@sbgenetics.org
Posted by Bruce Cohen on Thu, Apr 08, 2010 @ 06:23 PM
We’re pleased to announce the first release of VitaTrack®
-- a unique application for the iPhone, iTouch and iPad that makes it possible for women to track their daily intake of folate and folic acid. It’s simple to use. You just put in what you eat each day and it computes the Dietary Folate Equivalent (DFE), which is the standard unit of measure established by the Institute of Medicine.
The free app is now available for download on iTunes (search for “FOLATE” or “VITATRACK”).
You can also get more information about how it works on our dedicated web site: www.vitatrack.org.
This is our first app, and we’re learning as we go along. The initial release is limited to the iPhone platform and currently has only the U.S.D.A. data base. We’re planning to incorporate other data bases and to improve the ones we have.
We’re also planning an internet version and, if there’s enough interest, a version for other portable devices.
If you have a chance, please take a look and get back to us with your comments. You can fill out a form on the web or send us an e-mail at vitatrack@vpgenetics.com.
And, if you know someone who is contemplating or planning to have a child, please share the news. The more people who understand the importance of folic acid supplementation prior to pregnancy, the better.
www.sbgenetics.org
support@sbgenetics.org
Posted by Kelly Sitts on Wed, Mar 31, 2010 @ 04:59 PM
Folate and folic acid are essential for growth. Folate is a B vitamin found naturally in many foods, and folic acid is synthetic folate that is added to vitamins and grain products.
Folate is an essential vitamin for all people. As it helps our bodies make new cells, people who do not get enough folate may become anemic. If you are anemic, you have a low level of healthy red blood cells. Healthy red blood cells are important because they carry oxygen throughout our bodies.
Folic acid is also vital for women of childbearing age. Adequate intake of folic acid before and during pregnancy can help prevent birth defects like Spina Bifida.
The U.S. Government recommended dietary levels for folate vary by age:
- Younger than 6 months: 65 micrograms (mcg) a day (via breast milk or formula)
- 6 to 12 months old: 80 mcg
- 1 to 3 years of age: 150 mcg
- 4 to 8 years of age: 200 mcg
- 9 to 13 years of age: 300 mcg
- 14 and above: 400 mcg*
*Women who are breastfeeding should consume 500 mcg of folate. Woman planning a pregnancy are advised to consume 400 mcg of synthetic folic acid in addition to the folate found in food.
If you have had a baby with Spina Bifida and are planning to have another child, your doctor may prescribe a dose of 4 milligrams (mg) of folic acid, which is 10 times the recommended amount for adults. This level of folic acid supplementation requires a doctor's prescription.
Many women take prenatal vitamins when they are planning a pregnancy or are pregnant. However, because half of all pregnancies in the US are unplanned, most physicians advise women who could become pregnant to take prenatal vitamins containing 400 to 800 mcg of folic acid each day. The amount of folic acid in prenatal vitamins varies by manufacturer. As with all supplements, it's a good idea to check with your doctor first.
You can also get folate from your food. Foods high in natural folate are beans, vegetables, and some fruits and liver.
Here is a list of 20 of the best food sources of natural folate (in mcg):
|
Lentils, cooked, boiled |
1 cup |
358 |
|
Liver, cooked, braised |
1 slice (3 oz) |
172 |
|
Edamame, frozen, prepared |
1 cup |
482 |
|
Romaine Lettuce, raw |
2 cups shredded |
128 |
|
Pinto Beans, cooked, boiled |
1 cup |
294 |
|
Avocado, raw, all commercial types |
1 cup sliced |
118 |
|
Black Beans, cooked, boiled |
1 cup |
256 |
|
Black-eyed peas, cooked, boiled |
2 cups |
116 |
|
Spinach, raw |
2 oz |
110 |
|
Kidney Beans, cooked, boiled |
1 cup |
230 |
|
Broccoli, cooked, boiled |
1 stalk, small |
151 |
|
Brussel Sprouts, cooked, boiled |
1 cup |
157 |
|
Collard Greens, cooked, boiled |
1 cup, chopped |
177 |
|
Chickpeas, cooked, boiled |
1 cup |
282 |
|
Asparagus, cooked, boiled |
1/2 cup |
134 |
|
Orange Juice, raw |
1 cup |
74 |
|
Beets, cooked, boiled |
1/2 cup |
68 |
|
Orange, raw, all commercial types |
fruit (2-5/8" diameter) |
39 |
|
Papaya, raw |
1 cup, cubes |
53 |
|
Peanuts, dry roasted |
1 oz |
41 |
In many countries, including the U.S., Canada, Australia and most of Latin America, the government requires that folic acid is added to certain grain products. Not all countries have the same rules, and in many places, the decision to supplement grain products is voluntary. Foods commonly supplemented with folic acid include breakfast cereals, breads, flour, cornmeal, pasta and white rice. You can check your food labels to see how much folic acid is in each serving.
There is currently no evidence that you can get too much natural folate from foods, but there are risks associated with high doses of synthetic folic acid. High doses of folic acid may mask the symptoms of certain kinds of anemia, which if untreated can result in permanent nerve damage. Synthetic folic acid also sometimes causes nausea, diarrhea, intestinal discomfort and other side effects. Remember, before taking any supplement, you should contact your physician.
For more information please visit:
http://www.womenshealth.gov/faq/folic-acid.cfm/
www.sbgenetics.org
support@sbgenetics.org
Posted by Kristal Louie on Wed, Mar 24, 2010 @ 03:53 PM
Now is your chance to sign up for Adult Night at this year's SBA Conference!
- What: This year's Adult Night will see the Cincinnati Reds play the National League Champion Philadelphia Phillies
- Where: Great American Ballpark
- When: Tuesday, June 29
- Who: 18+ year olds with Spina Bifida, their partners or professional aides
The cost is $35 for a fun night with friends, family and the "boys of summer."
Go to http://conference.spinabifidaassociation.org/ and click on Register.
Tickets are limited so get yours today!
What if I have already registered for the Conference?
If you have already registered, log into the registration site by entering your username/password on the right hand side of the page and click the "Log into an Existing Account" button. This will bring you to a page titled "Home: My Registrants". Next to your name please click the "Click to Open Options" button. Select the "Update My Fees" option and you will be able to add the Adult Night option.
If you need assistance please call 866-374-6338 and a Registration Specialist will be happy to help you.
SBA's 37th National Conference: Leading the Way to the Future
June 27 - June 30, 2010 Cincinnati, Ohio
Register today at http://conference.spinabifidaassociation.org/!
www.sbgenetics.org
support@sbgenetics.org
Posted by Kristal Louie on Mon, Mar 22, 2010 @ 12:17 PM
Medical Resources
Since we began our study, we've received requests for information on a wide range of topics - stem cell research, nerve grafting/regeneration/stimulation, bladder & bowel incontinence treatment or the Xiao procedure. Here are a few samples of the many resources that are available on the Internet. Please remember that many sites are not monitored by professionals and tend to highlight research that favors a particular point of view.
The Medical News is a site that spans current hot topics in Men's Health News to Medical Procedure News. The site is easy to navigate. The terminology the authors use is still a bit on the technical side, however, it is generally easier to read than the original scientific articles. A few months ago they posted a blog on an article published in Nature Cell Biology about a discovery that "opens new doors to research on all spinal defects."
Medline Plus is not a resource for the most current medical news, but it is a great resource for understanding the basics on topics ranging from meal planning for diabetes to drugs, supplements and herbal remedies. The site even has interactive tutorials for many of the topics and health information in over 40 languages. So if you have a family member who does not speak English and is having difficulty understanding their medical condition, this may be your site. Medline Plus is run by the US National Institutes of Health & the US National Library of Medicine, two very trustworthy sources.
Hopefully the two resources above are a good start for finding the information you need. The most important thing to remember is that your child's physician should be your primary source for treatment information.
Kristal
www.sbgenetics.org
support@sbgenetics.org
Posted by Bruce Cohen on Thu, Mar 11, 2010 @ 11:23 AM
We began our groundbreaking study with high hopes of doing something never done before – recruit 1,000 women and their children who have Spina Bifida, to participate in a worldwide effort to understand the genetics of folate metabolism and the risks of Spina Bifida. When we started, we weren’t sure how long it would take, or how hard it would be.
Thanks to a truly extraordinary effort from people in 47 states and 17 countries and with the enthusiastic support of the Spina Bifida community, we’re delighted to let you know that we are nearly there. More than 1,000 women have signed up on our secure web site and more than 700 women and their children have completed the enrollment process by sending in saliva samples with consent forms. That is amazing.
Many have asked when we will complete the study. Some participants mail back their saliva kits after a few days, and others take several weeks. Recently we received a sample sent out 5 months ago! Regardless of how long it takes, we are grateful that the kits are sent in. We are very proud of all the hard work done because we understand how busy everyone is, and we can see the finish line just ahead. However we’re not done until we have 1,000 consented samples. Because we cannot predict how many participants will complete the process and how long everyone will take, we are continuing to enroll new participants and send reminders (we hope not too many!).
Once we have reached our ambitious goal, full analysis of the data should take about two months. Then the results will be submitted to a scientific journal for peer review. In another blog we’ll talk about the analysis and how studies like this are reviewed by experts before the results are published. The publication process can be frustrating for participants because we are not allowed to discuss the results during the reveiw period. We hope everyone understands that scientific research takes time, and with something as important as this, it’s essential that our work is done carefully and consistent with high quality medical research.
So, if you’ve done the survey on the web site, but haven’t had a minute to send in your kits, please do so as soon as you can. If you have any questions, or need a swab kit, don’t hesitate to contact us at 1.866.575.0110 or support@sbgenetics.org.
Most importantly, a big and heartfelt THANK YOU to everyone who has taken us this far.
www.sbgenetics.org
support@sbgenetics.org
Posted by Kristal Louie on Wed, Mar 03, 2010 @ 04:41 PM
Spina Bifida Association Young Investigator Award
Please pass this information along to all of the health care providers involved in your child's care.
The SBA's Young Investigator Award will grant up to 3 research fellowships in the area of spina bifida research. Those eligible must be newly independent researchers (MD, PhD, DSW, DScN) in established research facilities. Prior research for the applicant does not have to be in the field of spina bifida. Researchers must be US citizens. Those who have held the title of Assistant Professor (or equivalent) for >2 years at the start of the fellowship are NOT eligible.
- The ASHLEE ROSE ADVANCEMENT IN RESEARCH will grant up to $50,000 USD. Area of interest relates to epidemiology and miscarriage due to neural tube defects.
- The TETHERED CORD RESEARCH AWARD will grant up to $40,000 USD. Area of interest relates to tethered cord syndrome.
- The SCHNEIDER CHARITABLE TRUST AWARD will grant up to $25,000 USD. Area of interest relates to bladder/bowel continence.
Dead line for application is 9pm 5/1/2010. Proposals will be reviewed by a team of scientists and clinicians familiar with the field of spina bifida research.
For more information or to obtain an application form, go to this link at the SBA Website.
www.sbgenetics.org
support@sbgenetics.org