End fALS: Dustin & Corinna Quinn IVF PGT Fund

I’m hosting this fundraiser on behalf of my brother, Dustin Quinn, and my sister-in-law, Corinna (Cole) Quinn. If you’re here, chances are you already know one or both of these wonderful people and perhaps something about their ALS story.

BOTTOM LINE UP FRONT

Dustin and Corinna want more than anything to become parents. To do so in a way that aligns with their values and ensures their future little one comes into the world without the specter of ALS looming over his or her life–they need our help!

BACKGROUND

Our family has been afflicted across generations by a hereditary form of ALS (Lou Gehrig’s Disease), a progressive neurodegenerative condition for which there is still no cure. In his lifetime, Dustin has witnessed 5 family members live with and pass away from ALS. Our mother, Deb (McQueen) Quinn, is currently living with ALS. Building upon the courageous efforts of our late Aunt Rhonda (McQueen) Burrous, who pursued the identification of a genetic marker for our family during her illness, Dustin bravely underwent genetic testing in 2011.

As a result, Dustin learned he is a carrier of the SOD1 A4V genetic mutation that can cause familial ALS (fALS). This means it is “highly probable” Dustin will develop ALS in his lifetime and that any children he has (without medical assistance) stand a 50% chance of inheriting the same genetic mutation.

Since learning his results, Dustin has shared his positive outlook with me, several younger cousins, and others in the ALS community to help them determine whether to pursue genetic testing. Dustin is an example of resilience and positivity, and believes this knowledge, though sometimes difficult, can help people make informed decisions about their future. He is grateful to have built a life with Corinna they describe as “filled with abundant joy.”

In the years following genetic testing, Dustin traveled to the University of Miami to participate in the first systematic study of individuals at genetic risk for ALS. He also participated in the ALS Therapy Development Institute’s (ALS TDI) Precision Medicine Program, contributing scientific, lifestyle, and biometric data monthly to help identify why ALS impacts people so differently. Dustin has also traveled to or helped organize fundraisers for ALS patients and supported our mother, Deb, on public speaking outreach.

Some of these endeavors include jumping into the frigid New Jersey ocean in February (Joan Dancy and PALS Foundation), cheering on cyclists at the Tri-State Trek (ALS TDI), watching in awe at the mountaineering accomplishments of the late Josh Valentine (HARK), attending influential forums in Boston (ALS TDI), supporting local patients (Hearts for ALS NY), and more. Dustin also served as a camp counselor for Hope Loves Company, a retreat for children affected by ALS. He remains an open contact as an ALS TDI Young Faces of ALS Ambassador, demonstrating publicly that this disease can affect young people.

Throughout it all, Corinna has stood by his side and our family is so grateful he has found a loving partner like her to face these challenges with.

TODAY

Dustin & Corinna hope to have a baby! However, they want to protect their future child(ren) from ALS in every way possible and have chosen to pursue a combination of in vitro fertilization (IVF) and pre-implantation genetic testing (PGT) to ensure they do not pass on the ALS-causing gene mutation. This is a concept Dr. Steve Perrin first used our family as an example to illustrate in 2015, when he published the article, “Familial ALS Solution - Now!” in Translate ALS.

In working with the University of Rochester Strong Fertility Clinic and CooperGenomics, Dustin & Corinna have completed baseline testing for IVF and PGT, and all appears well to move forward in 2024! However, these procedures are very expensive–tens of thousands of dollars combined–and unfortunately not covered by their health insurance.

Planning for this, Dustin & Corinna formed Quinn Home Inspections & Property Services in 2022. Locals have likely seen them around Wellsville: a mowing/painting/cleaning team in their red Jeep Wrangler. While they have worked countless nights, weekends, and holidays they still fall short of the funds to reach this expensive goal anytime soon. We want to help them make this dream a reality!

ABOUT THEM

Dustin & Corinna have been together for 13 years and were married in 2021. They are both dedicated professionals who are involved in their small town community and lead active lifestyles. They are an adoring aunt and uncle, doting pet parents to Remy and Rizzo, loving family members, and friends to many. They enjoy travel, camping and hiking, fixing up their 100+-year-old “Century home,” movie nights, and time spent with family and friends. In addition to IVF/PGT, they are also pursuing their shared passion for helping children in need and will soon be eligible as foster parents.

I cannot think of two people who will make better parents or are more deserving of this happiness. Please join me alongside family and friends in contributing to and sharing this fund. We wish Dustin & Corinna all the best in their IVF and PGT journey.

-Kristin Quinn Cody

*The couple is bravely sharing a vulnerable part of their life with the world and we respectfully ask that all comments be positive and respectful. Any that are not will be deleted. Thank you.