ThinkGenetic Foundation

Educate and empower people and families living with genetic diseases

(978) 295-9730 | info@thinkgenetic.org

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ThinkGenetic Foundation Welcomes Amy Rickheim

We are thrilled to announce the addition of our new Genetic Diseases Research and Information Specialist, Amy Rickheim!

Amy received her undergraduate training at Florida Atlantic University in Boca Raton, FL where she received a Bachelor of Science in Microbiology. She completed her graduate training in Genetic Counseling at the University of Maryland School of Medicine where she received a Masters of Science in Genetic Counseling. Early in her career, Amy worked at Wake Forest University School of Medicine in North Carolina. After moving to Atlanta, GA she spent three years working for Genzyme Genetics. Amy left her role at Genzyme to stay home with her three young children. After many years at the helm of the Rickheim family, Amy is excited to once again be working in the field of genetics. Amy enjoys spending time with her family. She is an avid runner and marathoner.

Please join us in welcoming Amy to the ThinkGenetic Foundation!

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

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

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

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

Lafayette Nurses Join Experts and Patients to Learn About Genetic Conditions in Louisiana

ThinkGenetic Foundation to Host Free Program Focusing on Education in the Medical Community About Clues That Help Identify Patients at Risk to Have Genetic Conditions

What

The ThinkGenetic Foundation is hosting a free lunch and learn program for nurses and allied healthcare professionals. This event, sponsored with an educational grant by Sanofi Genzyme with support from several local and national organizations, will provide expert  information about genetic conditions common in Louisiana and the importance of early diagnosis. Discussion to include guidance for reducing time to diagnosis and directly hearing the powerful messages from five local patients living with these conditions in or near Lafayette, LA.

Why

Research has shown there are around 25 conditions and genetic predispositions to cancer  that have an increased frequency in Louisiana. Genetic diseases often mimic more common medical issues; however, many have “red flags” that can provide clues as to which patients require a genetic evaluation. The application of technological innovations helping healthcare providers identify patients at increased risk of a genetic condition has resulted in very useful tools. Special focus will be on the importance of early identification of genetic conditions and the perspective of members of the Lafayette community living with some of the common genetic conditions.

When

Thursday, June 20th, 11:00 AM – 1:00 PM

  • Registration opens at 11:00 AM with immediate lunch and presentations.
  • 11:05 AM: Why Think About Genetic?
  • 11:25 AM: TI in IT for G: Technological Innovations in Genetic Diagnosis to Help You
  • 11:40 AM: The Importance of Genetic Diagnosis: A Local Perspective
  • 12:00 AM: Patient Panel Discussion

Where

  • Petroleum Club of Lafayette
  • 111 Heymann Boulevard
  • Lafayette, LA 70503

Who

  • Dawn Jacob Laney, MS, CGC, CCRC – SPEAKER
    • Co-Founder ThinkGenetic Foundation
    • Assistant Professor/Genetic Counselor
    • Director of the Emory Genetic Clinical Trial Center
    • LSDC Program Leader
  • Carol Ogg, BS PHARM – SPEAKER
    • President
    • The COCo Marketing Group
    • Rare Genetic Disease Consultant
  • Margaret Landry-Bearb – SPEAKER
    • Retired, Hospital Admissions Coordinator
  • Dave Jacob
    • Co-Founder and Patient Advocate
    • ThinkGenetic Foundation
  • Cian Robinson
    • Executive Director
    • Innovation, Research, and Real Estate Investments
    • Lafayette General Health System
  • Annie Arabie – PANELIST
    • Patient Advocate
  • Cynthia Bordelon Durham – PANELIST
    • Patient Advocate
  • Dan Arabie – PANELIST
    • Founder
    • LA Helen Keller Deafblind Awareness
  • Matthew LaFleur – PANELIST
    • Patient Ambassador
    • FARA
  • Robin Richardson – PANELIST
    • Patient Advocate

EVENT PARTNERS AND SUPPORTERS:

For more information about ThinkGenetic Foundation visit www.thinkgenetic.org

# # #

Free Lunch and Learn for Louisiana Nurses and Allied Healthcare Professionals

Calling all Louisiana nurses and allied health professionals – You’re invited to a FREE Lunch and Learn on June 20th.

Closing the Genetics Gap:  A Discussion on Increasing Education and Access to Genetics Services in Medically Underserved Parishes of Louisiana

Learn about the clues in patient medical history that could suggest an underlying genetic cause for their health issues with a focus on conditions more common in Acadiana.

Panel Discussion include patients with genetic conditions found in Acadiana including:

  • Annie Arabie, patient advocate living with Usher syndrome
  • Cynthia Bordelon Durham, patient advocate living with Fabry disease
  • Dan Arabie, patient advocate living with Usher syndrome
  • Matthew Lafleur, Patient Ambassador at FARA
  • Robin Richardson, Patient Advocate living with Fabry disease

 Special speakers include:

  • Margaret Bearb, Retired, Hospital Admissions Coordinator
  • Dawn Laney, MS, CGC Genetic Counselor
  • Carol Ogg, BS Pharm

When

Thursday, June 20, 2019 from 11:00 AM to 1:00 PM CDT
Add to Calendar

Where

Petroleum Club of Lafayette
111 Heymann Boulevard
Lafayette, LA 70503  

Registration Required

http://bit.ly/GeneticsLafayette

This opportunity is sponsored, in part, by an educational grant from: Sanofi-Genzyme

ThinkGenetic Foundation Presents at FSIG Expert Fabry Conference

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.

ThinkGenetic Foundation presents at Fabulous Fabry Females Luncheon

The ThinkGenetic Foundation is excited to participate in the Annual Meeting of the Fabulous Fabry Females luncheon, hosted by The Emory Lysosomal Storage Disease Center. This annual event focuses on sharing stories, asking questions, and meeting others in the community.

Special presentation by Julia Alton, Executive Director at Canadian Fabry Association.

Sunday, April 22, 2018
Noon-2:00 PM
Canoe Restaurant
4199 Paces Ferry Rd SE,
Atlanta, GA 30339
(770) 432-2663

ThinkGenetic Foundation Presents “What’s up Doc” at Fabry Patient Empowerment Meeting

The ThinkGenetic Foundation is proud to present “What’s up Doc: How to Talk with your Healthcare Provider” at the Fabry Patient Empowerment Meeting in Atlanta, Georgia.

This in-person program was 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, the 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.

ThinkGenetic Foundation Presents at Canadian Fabry Association Empowerment Meeting

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

New Shop Items Added to ThinkGenetic Foundation Store

Our famous Geney has been making the rounds and by popular demand new items have been added to our fundraising shop.

What kind of items? Take a look at some of our recent additions. Remember, a purchase in the shop not only gets you a delivery to your door, but a chartible gift to ours. Every purchase goes to support our mission and programs.

So, without further ado, just a few of our new items in the ThinkGenetic Foundation shop…

978.295.9730
info@thinkgenetic.org