ThinkGenetic Foundation

Educate and empower people and families living with genetic diseases

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Sanofi Genzyme Supports ThinkGenetic Foundation Educational Initiative to Advance Awareness of Treatable Genetic Diseases in Louisiana

January 28, 2020 Ruth O'Keefe

New grants aimed at educating healthcare providers and closing the gap on diagnosis and treatment

PRESS RELEASE JAN 28, 2020 08:00 EST

LAFAYETTE, La., January 28, 2020 (Newswire.com) – The ThinkGenetic Foundation is leading an initiative to advance awareness and education in Louisiana about treatable genetic diseases with the help of three educational grants awarded by Sanofi Genzyme.

“Our initiative brings together leaders in healthcare, patient advocacy, and the close-knit community of Louisiana,” said Dave Jacob, President of ThinkGenetic Foundation. “By bringing local influencers to the table along with our passionate medical and education team, lives can be changed for those undiagnosed with, or receiving treatment for, genetic conditions.”

One important local influencer is Cian Robinson, Executive Director of Innovation, Research and Real Estate Investments at Lafayette General Health. 

“Learning more about genetics and its impact on health is a priority at Lafayette General and in the broader community,” Robinson explains. “This educational initiative benefits everyone.”

With a local influencer in place, Jacob is also collaborating with genetic counselor Dawn Laney, MS, CGC. In addition to her role at the ThinkGenetic Foundation, she is an assistant professor at Emory University Department of Human Genetics.

“The Lafayette healthcare system has been enthusiastic to learn more about genetics,” said Laney. “After engaging locally it’s clear to us that the medical community is ready to help diagnose and treat people living with genetic diseases in Louisiana.”

The Foundation has completed two educational events for both nurses and key healthcare provider teams. The next event will be taking place February 20 and will focus on the “A-B-Cs of GENETICS” for healthcare advocates in medically underserved parishes of Louisiana. This wave of the “Acadiana Initiative” will focus on raising healthcare provider awareness about key signs, testing procedures, and treatment options in genetic conditions such as Fabry disease, Pompe disease, Charcot-Marie-Tooth, Usher syndrome, and Tay Sachs disease.  Pairing understanding of these conditions with next steps should help providers, community members, and those living with a genetic condition work together more efficiently.

“Our goal is to jump start the conversation about shortening the time to diagnosis and improving patient outcomes,” explains Laney. “This includes understanding how to identify at-risk patients, order diagnostic testing, prepare and monitor disease progression, empower patient decision-making, identify at-risk family members, and begin targeted therapy as soon as possible.”

The ThinkGenetic Foundation mission ties in with several other initiatives by organizations like Lafayette General Health (a member of Ochsner Health Network), the University of Louisiana at Lafayette, and ThinkGenetic, Inc..

“These impactful events are just the first step in our initiative,” says Jacob. “Our vision is to provide support and resources to positively impact the awareness of genetic conditions in a major way. Our events directly support our mission to improve the quality of life for those living with or at-risk for a genetic condition and providing access to practical information and resources.”

Learn more about the upcoming event at http://events.constantcontact.com/register/event?llr=q99a66yab&oeidk=a07egt2zdme8c9fd46.

Source: ThinkGenetic Foundation

Filed Under: News Tagged With: charcot-marie-tooth, Cian Robinson, Dave Jacob, Dawn Laney, fabry disease, genetic counseling, Lafayette General health, pompe disease, Sanofi Genzyme, ThinkGenetic Foundation, University of Lafayette, usher syndrome

The A-B-Cs of Genetics – February 20 Lunch in Lafayette Louisiana

January 27, 2020 Ruth O'Keefe

Have a Complimentary Lunch and Learn the Basics of Genetics!

A Special Event for Nurse Practitioners and Other Interested Medical Professionals in Louisiana

Enjoy a delicious complimentary lunch at The Petroleum Club paired with an informative and interactive discussion.

Learn the basics of genetics in order to recognize patients at increased risk for a genetic condition. This includes working together to understand how to identify at-risk patients, order diagnostic testing, prepare and monitor disease progression, empower patient decision-making, identify at-risk family members, and begin targeted therapy as soon as possible, when appropriate. 

This event will focus on key signs, testing procedures, and treatment options in genetic conditions such as Fabry disease, Pompe disease, Charcot-Marie-Tooth, Usher syndrome, and Tay Sachs disease.  

When

Thursday, February 20, 2020
11:00 AM – 1:30 PM CST

Where

Petroleum Club of Lafayette
111 Heymann Boulevard
Lafayette, LA 70503


REGISTER HERE

AGENDA*

AGENDA

11:00 AM – Event Check-In and Pre-Survey

Please complete the Pre-Survey prior to the event by clicking here. (LINK GOES HERE)

11:15 AM – Lunch Served and Welcome Message

11:45 – The A-B-C’s of Genetics by Dawn Jacob Laney, MS, CGC

As a healthcare provider you have a very unique opportunity with each patient. Sometimes clues in patient medical history suggest an underlying genetic cause for health issues. In this presentation learn the basic of genetics, inheritance, creating a family history, and interpreting a family history.


12:15 – Local Patient Practice and Discussion

Putting that new knowledge to work, we will learn from a local patient advocate and chat about ways you can help drastically improve the care of patients and members of their families. Special discussion will include ways to engage with areas where access to care can directly effect long-term outcomes.

12:45 –  Closing Comments and Post-Test


SPEAKERS

DAWN LANEY, MS, CGC is a genetic counselor, assistant professor, clinical researcher, and director of the genetic clinical trials center in the Department of Human Genetics at Emory University in Atlanta, Georgia. She is a co-founder of ThinkGenetic, Inc., who strives to empower patients seeking possible genetic causes for their medical issues or looking for real-life answers to their questions about the impact of living with a genetic disease. Dawn has written many books for children and teens living with genetic conditions in addition to her dedication to direct patient care.

ROBIN RICHARDSON lives in Baton Rouge, and is the mother of three sons. She and one son are living with Fabry disease. Presently, she is on a patient advisory board, and promotes awareness through the Governor’s Proclamation for Fabry Disease.

HOST

ThinkGenetic Foundation is a non-profit 501(c)3 charity whose mission is to improve the quality of life for those living with or at risk for a genetic condition through education, quality information, access to genetic counseling and genetic testing, and partnerships with the advocacy community. Learn more at thinkgenetic.org.

This event is sponsored, in part, by and educational grant from Sanofi Genzyme.

NURSING CREDIT HOURS

This activity has been submitted to Louisiana State Nurses Association for approval to award contact hours. Louisiana State Nurses Association is accredited as an approver of nursing continuing professional development by the American Nurses Credentialing Center’s Commission on Accreditation. For more information regarding contact hours, please call the ThinkGenetic Foundation for more information.

In order to receive contact hours for this activity, you must attend this entire event and successfully complete a post-test with a passing score of 70%.

REGISTER HERE

Filed Under: Education, Events Tagged With: Dawn Laney, education, event, genetics, Lafayette, Louisiana, ThinkGenetic Foundation

ThinkGenetic Foundation Presents at FSIG Expert Fabry Conference

February 1, 2019 Ruth O'Keefe

The ThinkGenetic Foundation is excited to participate at the The Fabry Support & Information Group 2019 FSIG Expert Fabry Conference in Orlando.

This conference is especially for the Fabry patient community.

As part of the lineup, the ThinkGenetic Foundation will present “What’s up Doc: How to Talk with your Healthcare Provider” – a program designed to help patients (and family members) living with a genetic condition or seeking a genetic diagnosis talk to their healthcare providers about their symptoms and questions.

Learn more about the even by clicking here.

Filed Under: Education, Events Tagged With: Dawn Laney, Fabry, FSIG, genetic conditions

ThinkGenetic Foundation Presents at Canadian Fabry Association Empowerment Meeting

November 21, 2017 Ruth O'Keefe

Dawn Jacob Laney, MS, CGC, CCRC, of the ThinkGenetic Foundation is proud to present “What’s up Doc: How to Talk with your Healthcare Provider” at the Canadian Fabry Association Empowerment Meeting.

This presentation is designed to help patients (and family members) living with a genetic condition or seeking a genetic diagnosis talk to their healthcare providers about their symptoms and questions.

At the conclusion of the program, participants should feel more confident in talking to their healthcare provider to optimize their care and treatment as well as understanding resources available to help them better understand genetic testing.

Registration: Click here

Filed Under: Education, Events Tagged With: Canadian Fabry Association, Dawn Laney, events, Fabry, fabry disease, genetic conditions, ThinkGenetic Foundation

ThinkGenetic Foundation at NSGC 36th Annual Conference

August 1, 2017 Ruth O'Keefe

ThinkGenetic Foundation board member, Dawn Laney, will be attending the upcoming NSGC 36th Annual Conference.

The NSGC Annual Conference showcases advancements across the breadth of the genetic counseling profession to provide education and build community. Attendees will gain knowledge of clinical and scientific best practices and insights into emerging research. The conference provides a unique opportunity to engage and network with colleagues and pursue professional development.

  • When: September 13-16, 2017
  • Location: Columbus, OH
  • Venue: Greater Columbus Convention Center
  • Preliminary Program

Filed Under: Events Tagged With: Dawn Laney, NSGC

ThinkGenetic Foundation at Global Genes RARE Patient Advocacy Summit

July 30, 2017 Ruth O'Keefe

Both board members, Dave Jacob and Dawn Laney, will be in attendance at the 2017 RARE Patient Advocacy Summit hosted by Global Genes.

The 2017 RARE Patient Advocacy Summit brings rare advocates from across the globe together to Connect, Collaborate, and Activate. This educational conference creates a space for members of the rare disease community to share best practices, create important introductions, and help catalyze powerful collaborations. Attendees share their experience, knowledge, and expertise as conference presenters and or participants.

When: September 14-15, 2017
Location: Irvine, California
Venue: Hotel Irvine

Learn more at https://globalgenes.org/2017summit/

Filed Under: Events Tagged With: Dave Jacob, Dawn Laney, Global Genes

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