Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Fourth Annual 5K Walk for Abby benefiting the Foundation for Mitochondrial Medicine

AbbyJoin the Foundation for Mitochondrial Medicine for the fourth annual 5K “Walk for Abby: In Honor of Abby Sauerhoefer” on Saturday, April 26. This fun, family-friendly walk will help support special needs children as well as children and elderly afflicted with various forms of mitochondrial disease such as Autism, Parkinson’s, Alzheimer’s, and Lou Gehrig’s Disease.

abby-walk

The event will include a three-mile walk (Main Street, Depot Street, Perry Lane and Reservoir Avenue), a raffle, face painting, DJ, and refreshments.

Cost is $20 for adults and $10 for children. All proceeds benefit Abby’s Helping Hand Foundation and the Foundation for Mitochondrial Medicine. For more information, or to register, visit: www.AbbysHelpingHand.com

How Walk for Abby Started:
In July of 2009, Abby’s parents took her to Atlanta for her yearly visit with Dr. Schoffner.   On their way home after the appointment and hear heart-breaking news about other families, The Sauerhoefer Family felt they needed to do more to help in the mission to find a cure this debilitating disease.

After meeting with the Foundation for Mitochondrial Medicine, the idea of a walk was born.  The foundation helped to design paraphernalia and a website and brainstormed on networking ideas.  Team Abby set what they thought was a lofty goal of $10,000.  That first year, Walk for Abby raised $45,000.  In total, Walk for Abby has raised over $130,000 to benefit the Foundation for Mitochondrial Medicine.

Can’t make it to the walk, but still want to support Abby? You can still donate by clicking the button below.

DONATE

 

Vernon Center Middle School Hosts Hat Day to Honor Abby and Fund Research for Mitochondrial Disease

Students at Vernon Center Middle School in Vernon, CT are hosting a Hat Day in Honor of Abby on Thursday, April 10, 2014.

Hat Day Fundraiser at Vernon Center Middle School

Hat Day Fundraiser at Vernon Center Middle School

In 2013, Ms. Kate Barber’s 7th grade Language Arts classes at Vernon Center Middle School were recently able to spend time with Abby Sauerhoefer, who suffers from Mitochondrial Disease. They have enjoyed taking turns reading to Abby during her visits. After learning about mitochondrial disease, VCMS students decided to hold a Hat Day fundraiser and were able to raise over $600 to donate to the Foundation for Mitochondrial Medicine.  Furthermore, these students are now reading about the challenges of integrating students, of many abilities, into the classroom.

Let’s help them exceed last year’s fundraising amount and continue to raise awareness for mitochondrial disease.   Participate locally at VCMS or online by making a donation to The Abby Sauerhoefer Fund for Mitochondrial Disease Research.  When making an online donation, write “Hat Day for Abby” in the comment box.

DONATE

Hat Day Fundraiser for Abby

VCMS student reading to Abby

Abby Sauerhoefer, daughter of Carol and Joe Sauerhoefer, has struggled with breathing and feeding issues from birth. By two months, we knew something was terribly wrong when she started having frequent, uncontrolled movements of her arms and legs. We learned that these episodes were infantile spasms or seizures. Extensive testing and treatments led to a diagnosis in July 2009 of a mitochondrial disorder. Along with daily seizures, this disorder does not allow her to walk, speak, or sit up, and her only means of nourishment is through a feeding tube. Seizures are managed, but not completely eliminated, with medication and diet. Although Abby is not able to talk, she expresses her emotions through “Abby songs”. She loves music and enjoys the company of other children. She moves around by rolling or using a stroller. We are hopeful that the foundation will find new treatments to help Abby and appreciate your support in finding a cure!

Learn More

We are Thankful for All of You!

Individuals who are involved with the Foundation for Mitochondrial Medicine (FMM) are often asked “Why.”  Why do you give?  Why are you involved?  Why is it so important?  As we all get ready for Thanksgiving, FMM would like to say THANK YOU to all of our team members, partners, committee members and volunteers.  We are thankful for each and every one of you and your passion to help us raise awareness, fuel the connections and fund the cures for mitochondrial disease!

Learn more about people involved with FMM!

Danielle Poppens and FamilyDanielle Poppens
Danielle Poppens and her husband, Jim, learned about FMM from a friend who invited them to the inaugural Hope Flies Catch the Cure event in 2010. Danielle was interested in attending, and donating, because she has a son with autism and was aware of the relationship between autism and mitochondrial dysfunction.  Read more…

katie

Laura and David Green
In some ways, Ellie is like a typical kid–she has an easy and infectious giggle, she loves to splash in the pool, wrestle with her 14-year-old sister and watch The Sound of Music.  However, this devastating disorder affects every part of her life and body.  Unlike many children with mitochondrial disease, Ellie does walk, but a better description would be that she teeters, stumbles and careens.  Ellie is nonverbal–she has a few signs and gestures and is very excited about her communication program on the iPad. Still, many days, even these gestures and words are hard for her to express.  A child in Ellie’s class once said it best:  “Ellie’s body doesn’t always do what she tells it to do.”  Read more…

2012 JAX 045Blayne Shelton
My wife, Jonna, gave birth to Audrey in August of 2007.  Older sister Claire was born 2 years before so we could tell that something was different.  Audrey had difficulties with feeding due to reflux which led to weight loss and an overall failure to thrive.  We consulted with several medical professionals throughout the course of the following 3 years before Audrey was diagnosed with mitochondrial disease by Dr. John Shoffner at Medical Neurogenetics.  Read more…

Audrey Howe
ATT79902
My name is Audrey and I am 4 years old. I have mitochondrial disease. When I was three days old, I quit breathing and spent a lot of time in the ICU. I have low muscle tone, difficulty swallowing, heat intolerance and cerebral spinal folate deficiencies. I live in Indiana, just south of Indianapolis. My parents took me to Atlanta, Georgia when I was almost 2 years old and I got my muscle biopsy confirming my diagnosis.  I take many medicines every day, but do not let Mitochondrial Disease stop me!  Read more…

Miles in Memory of MichaelaTheresa Gaejtens
As I watched my 14-year-old son, Remi, run a 5K in the fall of 2011, I thought to myself, “Isn’t it incredible – I had a daughter who had no energy, and I have a son with an overabundance of energy.”  It was at that race that I came up with the idea of having a 5K to help raise awareness of, and funds to find a cure for, mitochondrial disease.  Read more…

team-belnap-hope-fliesNewell Belnap
Newell Belnap is the father of 4 wonderful children.  They have fun together and work hard. One of the family’s mottos is ”The Belnaps can do hard things”. He has big plans for his children and want them to be happy. Read more…

Abby Sauerhoefer
abby-smiles
Five year old Abby Sauerhoefer attends Kindergarten at Broad Brook Elementary. Abby has struggled with breathing and feeding issues from birth. By two months, we knew something was terribly wrong when she started having frequent, uncontrolled movements of her arms and legs. We learned that these episodes were infantile spasms or seizures. Extensive testing and treatments led to a diagnosis in July 2009 of a mitochondrial disorder. Along with daily seizures, this disorder does not allow her to walk, speak, or sit up, and her only means of nourishment is through a feeding tube. Seizures are managed, but not completely eliminated, with medication and diet. Although Abby is not able to talk, she expresses her emotions through “Abby songs”. She loves music and enjoys the company of other children. She moves around by rolling or using a stroller. We are hopeful that the foundation will find new treatments to help Abby and appreciate your support in finding a cure!  Read more…

 

 

Hope Flies – Walk for Abby Raises $50,000

Hope Flies – Walk for Abby, the third annual 3 mile walk and fundraiser to honor local Broad Brook resident Abby Sauerhoefer and the Foundation for Mitochondrial Medicine, was held Saturday, April 27, 2013 at Broad Brook Elementary School and raised $50,000 for the Foundation for Mitochondrial Medicine. Abby, age 5, is the daughter of Carol and Joseph Sauerhoefer and suffers from mitochondrial disease.

The Sauerhoefer family raised money through both registrations for the walk and through corporate and individual sponsorships from the local community.

“We are so thrilled that the community supports our event each year,” said organizer Carol Sauerhoefer. “We’re glad to do our part to raise awareness and raise important funds for research for treatments of mitochondrial disease.”

Examples of heartwarming community support include 7th-grade students at Vernon Center Middle School. After reading to Abby for an afternoon, the students held a Hat Day fundraiser at their school and raised more than $600 to donate to the Foundation. Additionally, local Girl Scout Troop donated a portion of proceeds from their cookie sales to the effort.

The event included a 3-mile walk, a raffle of fun prizes, face painting, entertainment and refreshments. Event “Angel” sponsors included Southern Auto Sales Inc., The Littlest Bake Shoppe, Peerless Tool & Machine Company, New York Yankees, Atlas Copco Compressors and Drs. Whiteley & Daslia, D.M.D., LLC. Local television meteorologist Joe Furey of FOX Connecticut TV served as emcee for the event.

“The Foundation is grateful for the commitment and energy the Sauerhoefer family gives to the Hope Flies – Walk for Abby each year,” said Laura Stanley, executive director for the Foundation for Mitochondrial Medicine. “We rely on fundraisers like these to help make mitochondrial disease more of a household name and to direct funds for treatment-oriented research.”

All proceeds from the event benefit the Foundation for Mitochondrial Medicine. For more information on mitochondrial disease and the relationship of mitochondrial dysfunction with many common diseases, like Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s and more, please visit the foundation’s website at www.mitchondrialdiseasesorg.

7th Grade Students Help Fund a Cure for Mitochondrial Disease

Hat Day Fundraiser at Vernon Center Middle School

Hat Day Fundraiser at Vernon Center Middle School

Vernon Center Middle School Hat Day Fundraiser

Students in Ms. Kate Barber’s 7th grade Language Arts classes at Vernon Center Middle School were recently able to spend time with Abby Sauerhoefer, who suffers from Mitochondrial Disease. They have enjoyed taking turns reading to Abby during her visits. After learning about mitochondrial disease, VCMS students decided to hold a Hat Day fundraiser and were able to raise over $600 to donate to the Foundation for Mitochondrial Medicine.  Furthermore, these students are now reading about the challenges of integrating students, of many abilities, into the classroom.

2013 Walk for Abby

A three mile walk and fundraiser will be held on April 27 in Broad Brook, CT.

More information can be found:
Walk for Abby Event Page
Walk for Abby Facebook Page

Abby Sauerhoefer Vernon Center Middle SchoolHat Day Fundraiser for Abby2013 Hat Day for Abby Sauerhoefer

Walk for Abby – Raising Money for Awareness and Helping Other Families

Check out the Hope Flies: Walk for Abby Facebook Page

Registration for 2013 Walk for Abby

Abby’s Story

Five year old Abby Sauerhoefer attends Kindergarten at Broad Brook Elementary. Abby has struggled with breathing and feeding issues from birth. By two months, we knew something was terribly wrong when she started having frequent, uncontrolled movements of her arms and legs. We learned that these episodes were infantile spasms or seizures. Extensive testing and treatments led to a diagnosis in July 2009 of a mitochondrial disorder. Along with daily seizures, this disorder does not allow her to walk, speak, or sit up, and her only means of nourishment is through a feeding tube. Seizures are managed, but not completely eliminated, with medication and diet. Although Abby is not able to talk, she expresses her emotions through “Abby songs”. She loves music and enjoys the company of other children. She moves around by rolling or using a stroller. We are hopeful that the foundation will find new treatments to help Abby and appreciate your support in finding a cure!

Event Details

Date:
Saturday, April 27, 2013
Location:
Broad Brook Elementary School, 14 Rye Street, Broad Brook, CT

Event Page (for more information on the 2013 Walk for Abby)

Schedule of Events:

Hope Flies: Walk for Abby8:30 am Registration Opens
10:00 am Walk Begins
The event will include a three mile walk around Main Street, Depot Street, Perry Lane and Reservoir Avenue. Please join us after the walk for entertainment, face painting, raffle drawing and refreshments.

Third Annual Hope Flies Walk for Abby

The Foundation for Mitochondrial Medicine is pleased to announce its Third Annual Hope Flies Walk for Abby on Saturday, April 27, 2013. All proceeds from the event will support the development of research and treatments for the many forms of mitochondrial disease. We look forward to seeing you for this fun, family-friendly event.

Questions or Additional Information

Carol Sauerhoefer at walkforabby@gmail.com or call 860-627-5119.

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