SERC | Southeast NBS & Genetics Regional Collaborative

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Patients and Families (ver2)

The Southeast Newborn Screening & Genetics Regional Collaborative (SERC) is a federally-funded initiative dedicated to improving the health and quality of life of individuals with heritable disorders.  Providing patients and families with up-to-date, relevant information about newborn screening (NBS) and genetics is an important goal of SERC.  Below are links to information and resources specific to patients with genetic disorders and their families. 


Consumer Alliance
Workgroup

Consumer Alliance
Mailing List

Genetic Disorders

News and Events
 

Centers Directory

Personnel Directory

Medical Foods Survey

Volunteer Opportunities
 

Annual Meeting
 
A Parent's Guide to Newborn Screening

In a gentle, warm and supportive context, A Parent's Guide to Newborn Screening explains what newborn screening is, its purpose, the test procedure, and what parents need to do if retesting is necessary:

A Parents Guide to Newborn Screening

Una guoa para pacientes sobre las pruebas
de diagnostico para los recion nacidos

Brought to you by:

For more information contact the March of Dimes.

Affordable Care Act

The Affordable Care Act was passed by Congress and then signed into law by the President on March 23, 2010.

On June 28, 2012 the Supreme Court rendered a final decision to endorse the health care law.

The Affordable Care Act is a federal statute aimed at decreasing the number of uninsured Americans and reducing the overall costs of health care. Many of its provisions significantly impact children and youth with special health care needs, a population important to the purpose of the Southeast Regional NBS & Genetics Collaborative.

Please click on the links below for additional information.

Side-by-side comparison of major provisions and the implications for children and youth with special health care needs

Clickable state information

CHIP program

 

Metcamp 2013
June 24 - 29
Atlanta, GA

2013 Emory Metabolic Camp Brochure

 

Metcamp 2012

2012 Emory Metabolic Camp Brochure

Camp Cook Flyer

Camp Cook Application

 

Metcamp articles

Recipe for Survival article (Emory Magazine)

SERC is proud to be partnered with
Genetic Alliance

Last Modified: May 23, 2013

News
Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey Participation
Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey ParticipationResearch OpportunityResearchers with SERC Medical Home & Transitioning Workgroup and SERC Consumer Alliance are are recruiting individuals ages 25-35 (and/or…

Limestone Life article highlights PKU (Athens, AL)
Limestone Life article highlights PKU (Athens, AL) Athens, AL based magazine Limestone Life features an article in their latest edition about Adam and Julie Tucker and their…

Patient and Family Events
<< << February 2017 >> >>
S M T W T F S

SERC Consumer Highlights
February 2017

Face Forward: A Young Womanâs Experience (by Millie Terry)

Face Forward: A Young Womanâs Experience (by Millie Terry)

Face Forward

 

A Young Woman’s Experience

 

by Millie Terry

 

            Face Forward is a project of Next Step, an organization dedicated to empowering young adults with genetic conditions to cultivate their leadership, advocacy and life skills. The goal of Next Step is to help participants achieve good health, positive behavior, socioeconomic success and civic engagement. The Face Forward program consists of workshops, music therapy, a resource fair, and many opportunities to discuss transitional issues over the span of four days.

            The first annual Face Forward Conference took place Tuesday July 12- Friday July 15, 2011 in Ashland, Massachusetts. I was looking forward to meeting other young adults living with genetic disorders from states all over the eastern half of the U.S. As the only person from the Southeast, I was quite nervous to arrive in Massachusetts, not knowing anyone for a thousand miles. However, I settled in quickly and got to know everyone through opening games and activities to “break the ice.” From the very first moment I spoke, I couldn’t help but astonish everyone with my “accent”.

            The second day at the conference was very exciting. As an exercise of functioning as a team, those of us who were willing took turns climbing to the top of a tree and jumping from the tip top to zip-line down. While one person would climb, the rest of us would cheer him/her on. It was so great to see everyone facing their fears courageously as they were backed up by a large group of cheerleaders. I was especially inspired to see the determination of two brave young women with mitochondrial disease; both wheelchair-bound and feeding tube reliant. Lauren and Sarah both emerged from their chairs and made the climb with their amazing arm strength.

            Conference workshops dealt with issues such as transitioning into adult care, managing a disease at college, stress management, disclosing health information, nutrition education and job interview/resume preparation. Every class was very well prepared and beneficial to my understanding of how to manage my PKU throughout various life stages and in many situations.

            Throughout the conference, I learned so much about other genetic disorders and their management. It was very difficult to tell who had what condition. In an effort to better understand each others’ conditions, we split into groups based on disorder and each group elected a representative to summarize said disorder. Participants gave presentations on many different diseases from mitochondrial disease to PKU to Marfan’s syndrome. Questions were asked after every presentation.

            The third day of the conference, there was an Iron Chef- style cooking challenge. We were all split into teams and allowed to choose from certain ingredients to see who could make the best hot dog or hamburger and pasta dish. In addition to making great food, the contest was also judged on apron decoration and creativity of team name and of dish presentation. With a large group of competitive young folks let loose in the kitchen area, it is needless to say the competition got interesting. Finished products included a pasta dish with pineapple and a hot dog with a hula skirt made from pineapple leaves. Celebrity judges for the competition included David and Lynn Paolella, of Cambrooke Foods.

            Thursday night drew the conference to an end with a talent show of singing, instrumental music, dancing and comedy. Following the show, there was a brief ceremony of passing out t-shirts with the Face Forward logo and certificates signifying the specific personality-based award each person had earned during the week. I proudly claimed the prestigious Southern Belle award; they never could get over the accent.

            Friday morning, vendors such as Applied Nutrition and Cambrooke Foods visited and allowed us to sample lots of products before we had to leave. Everyone was very sad to leave new friends, and so was I.

            The Face Forward conference was such an incredible experience. Not only was I able to learn ways to improve my leadership, advocacy and professional skills, but I was also privileged with the opportunity to forge relationships with some pretty amazing people. The conference could not have existed without the creativity and tireless effort of its super staff.  

What I learned from others about their conditions has added to my interest and cultivated my passion for nutritional treatment of genetic disorders.     

 

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