Casey

Support a Life-Changing Cause

Make a difference in the lives of those battling a rare disease illness.  Join us in providing hope and support.

Who is Casey and what makes HMERF so special?

Casey  and about 1,000 other patients have a rare form of muscular dystrophy called Hereditary Myopathy with Early Respiratory Failure, or HMERF (pronounced H-MERF).

This type of muscular dystrophy causes a progressive loss of muscle mass, eventually leaving patients to become bedridden and in severe pain. Ultimately, the disease will also determine how long each patient can continue to breathe on their own.  For each patient, and for unknown reasons, the path through this disease can be very different for each person.

For Casey, not knowing when she will no longer be able to breathe on her own means the ultimate compromise of her life:  when this happened to her dad, he had become bedridden and dependent upon a vent through his throat to breathe for him.

Many people confuse muscular dystrophy (MD) with multiple sclerosis (MS). A simple way to remember the difference is that MD stands for “Muscle Death.” Once muscles die, they cannot regenerate—at least not yet—which makes every moment crucial.

People with HMERF live their life on a ticking clock, but with your help and support, we can push the science forward and fight back against this devastating disease.

The ONLY way Casey and others like her can have a happy ending is through research.

And yes, every donation that is given moves us closer and closer to finding that treatment that can slow the disease down or even cure it.  As of 2024, 95% of all donations go directly toward funding research.

HMERF Is A Progressively Debilitating Disease Caused By Progressive Weakness And Muscle Wasting Across The Legs, Hips And Respiratory Tract.

It is an ultra-rare form of Muscular Dystrophy affecting fewer than 1,000 individuals in the US but many thousands around the world.

Casey's story is much like other people with HMERF. Each patient had plans for their lives and HMERF has taken those plans and cast them aside. For example, Casey is a nurse with the Wellstar West Georgia Medical Center in LaGrange GA, where she works in the pulmonary clinic. Casey is married to her high school sweetheart, Josh Duffield, and they have two sons, Joshua and Ethan. Because HMERF is a late-onset form of muscular dystrophy, when she decided to have children she didn't know that she had inherited this defective gene from her dad, which meant that she didn't know she had inherited this disease. Only at about 35 years old, well after having her two children, did she become symptomatic. Since HMERF muscular dystrophy is an inherited condition, each HMERF patient runs the unknown risk of unwittingly passing this disease to her children.

Find a cure for HMERF

Without your support, the science stops.

UPDATES
* This information is provided  as a courtesy to our donors and readers so they may understand the current research project intended to find a treatment for HMERF muscular dystrophy.  It is not intended to convey any specific medical advice; medical advice must come from a certified medical professional, which I am not.  I am Casey's mom and pay deference to our donors by using this platform to keep them updated.  Should you have any questions for me, please contact me at chrisduane@caseys-cure.org.  I will respond to you as soon as possible.

August,2024

Hi to all!

I know it's been a while since you've received an update, but we have been hard at work getting our organization ready for the research to begin.  We've hired a lab, EverlumeBio, who you may remember conducted the Amenability Study in November 2023.  With the initial research in place from this study, we were ready to begin to work toward a therapeutic for Casey's HMERF.  Since so much has happened between January and now, it is easiest for me to provide a link to the newsletter that was sent out at the end of August (2024).  It provides you with the information that has developed in that time and we look forward to hearing from you.  If the newsletter link isn't working, please reach out to me chrisduane@caseys-cure.org  and I'll get one over to you as quickly as I can.

With regards and gratitude,

Chris Duane, Casey's Mom 💕

 

March 25, 2024

Hello to all readers out there!

This month's research meeting was more about procedures and processes that need to be put into place.

  • With the arrival of Casey's blood samples, the development of her cell lines has started, which will be followed by CRISPR-ing and creating the CRISPER-ed cell lines.  It is my understanding that this will a few months to complete.
  • I have some administrative activities to complete and get the finished product back to EverlumBio
  • Discussion of natural history studies explained to me that natural history studies are not patient generated, but rather come from the medical professional treating the HMERF patient. This requires HIPPA release forms from the HMERF patients, but more to come on that at a future date as I am unclear about this process. I will keep you informed as I find out more.

As a reminder to you our readers, right now the target project is to create an ASO for HMERF.  Due to the length of the titin gene and the location of Casey's and other HMERF patients occurring at exon 344, gene therapy is not a targeted treatment.  The damaged gene is too far down the protein chain to allow for an effective delivery, which may create toxicity problems.  Thus, the ASO is our goal.  For more on ASO treatments, you can read more about them here.

Until next time, take care of yourselves!

Gratefully,

Chris Duane, Casey's mom... 💕

February, 2024

Hello ! Welcome to February!

I am posting this update about our work within the Foundation for Casey's Cure to  keep you informed as we work toward growing our organization.

As you  may (or may not) know, when an organization undertakes medical research, it is required to create a scientific advisory board.  These esteemed members  from the neuromuscular community volunteer their time to meet with the researchers and The Foundation's Board of Directors on a quarterly basis.  They're tasked with monitoring the work the lab is doing, and whether the lab is keeping to the time table established in the initial work order.  They're also tasked with providing feedback to the research team that may inform their work to the betterment of the outcome.

Currently, we have several meeting scheduled and I look forward to meeting with these neuromuscular translational scientists/researchers.  Since this is my first opportunity to participate in these meetings, I expect that I will learn a lot from them.

The Foundation is also working with another foundation to support the awareness of Rare Disease Month, which is every February.  Additionally, we want to bring awareness to Rare Disease Day, which, this year, is February 20, the rarest day of the year!  In non-leap years, it is celebrated on February 28th.

To support our awareness campaign, the City of LaGrange (GA) will be lighting up our fountain, that is the center of our town, each evening from February 23-February 29 in multi-colored display representative of the Rare Disease Community.  There are~10,000 rare diseases and many of them have outcomes that mimic other diseases.  However, each rare disease is distinct from the other, regardless of much they appear to be similar.

Unfortunately, I can't seem to get the live feed of the fountain to embed here, so I will include this link that you may use to see the fountain and the lights during the designated evenings. (Please remember, the lights are only visible when it's dark... I had to be reminded of this myself...)   http://www.lgtv.org/Home/Square (February 23-February 29, 2024.)

I will share more when I know more!  Thanks for your support.

Gratefully,

Chris  Duane, Casey's mom...💕

January, 2024

As promised, the amenability study has been finished and we are moving forward to the next phase of drug development.  For my science buffs out there, the next phase will involve the creation of cell lines, Small Molecule Screening, Long Read Sequencing, and concurrently,  the study of her gene in a mouse. (This is known as using a mouse model.  My understanding is that the toxicity tests are examined here, but remember, I'm the novice here and if I find out anything differently, I will be sure to update you.)

If any of our followers want more detailed information about where and what work is being done in this $140,000 stage two pursuit, please feel free to reach out to me.  I am more than willing to share whatever I know with our followers.

So-- here's to Casey's Mouse! The one that we've been given through a grant program... YAY!!

UPDATE (08/24):  To our scientist/medical community: the Founder's level has been made, which opens the way for the mouse that will let us know if we can effectively knock-down exon #344. This level should be ready by Christmas, 2024. 🤞🤞🤞

Casey's Mouse

P.S.  Support "Cure The Mouse by purchasing a sweatshirt or t-shirt here!

August 2023

We've finally engaged with a biotech firm that will begin the process called an amenability study, which will lay out our options for treatment, based on Casey's genetic profile!

This is the first stop of many, but each of you has helped us get there!

Whether you bought a shirt or two or made a contribution, you kept us going until we were able to locate the lab that would get this research off the ground.

Thank you all so very much!

July 2023

We may have found a lab that has agreed to work on Casey's cells!! We're in talks right now, but as soon as there is more to know, you will find it here!  

So thank you to every one of you who have contributed to this cause.  

Your donations, large and small, have allowed us to keep searching for help, event when the hour seemed darkest.

Thank you for your conficence that if we kept at it, we'd find the way.  Your love that motivated you to give to support us has enable us to keep searching and made you part of a picture that will change lives.

 

A Note about our history...

When I first launched this foundation, I can admittedly confess that I knew little to nothing about non-profits or fundraising for medical issues. We have successfully marked two full years as a non-profit with our third anniversary coming up in August 2022. In this video, I state that the Foundation needs to raise $350,000... for Casey's research to begin. There are clarifications and additions I want a potential or current donor to know.

  • When looking for medical cures, we all build on the backs of those who have gone before. Work with protein chains (Oligonucleotides specifically) and has been undertaken in serious medical studies since 2003. Using those initial studies as a foundation, muscular dystrophy research has launched itself to treatments that once seemed so far away... perhaps impossible.
  • However, current research trends function across multiple medical fields and operate from multiple funding bases; universities, pharma, NIH, and patient advocacy groups like Casey's Cure.

November 8, 2020
Hi. My name is Chris Duane and I’m Casey's mom. I'm here to ask for help in finding Casey’s Cure.

The goal of the Foundation is twofold:

  • To raise money for Casey's research (for HMERF) and to share it with the muscular dystrophy community because anything we find out may be of use to another muscular dystrophy patient.
  • But (we want to ) also raise awareness of muscular dystrophy’s debilitating effects on the family and the patient as well.

And that's why I'm here today- - asking for your help because  without you, the science stops.

I can't do it without you. Casey can't do it without you. We desperately need your help. So (we’d ask) if you would use one of the links on this page and give whatever you can, you will have helped us get that one step closer to finding Casey's cure (for HMERF).

I thank you from the very very bottom of my heart…

  Who is Casey?

Casey, a pulmonary nurse at Wellstar West Georgia System, is one of about 1,000 people diagnosed through genetic testing with HMERF.  Casey was diagnosed at age 35, the same age as her father was when he became noticiably symptomatic; but at the time the technology didn't exist to isolate and identify the disease. If her disease follows a progression similar to her father's, she will eventually rely on a wheelchair, and then become bedridden and ventilator-dependent. As has been said before, sitting idly by while her body just disappears is not an acceptable answer.

The only way to minimize these realities is through research.  Research that is very costly.  There's no doubt about that.  To date, more than $150,000 has been raised and spent on the first stages of research.  And there are other expensive stages to follow.

So Does Your Contribution Matter?
Absolutely. Prior donations already advanced our muscular dystrophy research. Our focus is finding a treatment/cure for Casey, potentially her offspring through a private lab's genetic study and make it extend into the broader HMERF community.

This therapeutic, when complete, will be used to create treatments for others with HMERF. Casey is, to some extent, a guinea pig for this disease.  Imagine, if you will, being a guinea pig for a treatment. But taking the science out of the academic research labs and into a therapeutic discovery lab is a huge undertaking that will ultimately lead to unlocking mysteries of the titin gene.

Working with geneticists, we're optimistic. Your support keeps this vital science progressing. Your gift might fund a breakthrough, catching the attention of pharma or NIH funding.

Your donation backs Casey's ongoing  work of using her tissues and DNA to guide the research for all HMERF patients—crucial to halt her HMERF muscular dystrophy and change lives, benefitting society. Join us to be the change for Casey and many others.

Casey's Story

Please Donate Today

Casey's  Journey with life, family and HMERF...
A 5 minute video that will be time well spent.

When Casey was diagnosed with this disease in 2014, as her mother, I was overcome with grief and despair I'd never known before. I had watched the gradual deterioration Casey's dad suffered-- and Casey had been his primary caretaker during the last and most painful and suffering days of his illness.

She was a trooper. For two years, she went to nursing school by day, and by night she took care of her son Joshua and her dad and studied until 2-3 AM each evening just to get up and do it all over again.

The grief I feel to this day at the prospect of her painful future truly fills me daily. It also drives me to find a treatment or cure for this ultra-rare form of Muscular Dystrophy.

It's 2024 and I've learned a lot about how research works.  Initially, I was told that finding a cure would be all but impossible; and finding a researcher? Even more so.

But a lot has changed.  We actually have an international team of the leading neruomuscular researchers working directly with Casey's tissues, trying to uncover the trigger that stops the muscle-making cycle that causes HMERF. Two of our team members from Italy (The University of Padova) are currently collaborating with our US based science team to obtain a grant that will study the role exon #344 plays in muscle functioning. If won, the grant work will begin in early 2025.  This research could potentially unlock one of the long standing medical mysteries surrounding the titin protein chain and how the protein controls muscle functioning.

We've also learned that believe it or not, an answer is within our reach.

So please, consider making your gift a monthly recurring gift, because without you, the science stops.

With love and gratitude,

Chris Duane, CEO and Casey's mom...💕

IG Hope Rises

Believe it or not, if 2003 sounds so long ago, that research contributed to the 2019 medical breakthroughs that began happening for muscular dystrophy.

We have contracted with a lab, EverlumBio, who is preparing cell lines of Casey's cells that will be tested against currently approved FDA drugs. It is our hope that one of the existing treatments has a positive impact on the functioning of her damaged gene.

Will you help us get HMERF onto the research map and save my daughter's and possibly my grandchildren's lives? Please consider making your gift recurring.

Without you, the science stops.

About The Foundation:

When we started this journey, we believed finding researchers would be nearly impossible. But luck and circumstance intervened. A relative devoted to research connected with his community, and in just 30 days, we had three groups of researchers eager to study Casey's genes. Quite a success, isn't it?

Please think about making a monthly donation to help us support these researchers who hold the key to making Casey's cure a reality.

Your donation keeps the researchers working hard to find the right genetic sequence for HMERF and other muscular diseases.

Money raised will be used to fund our foundation's work, its mission, which is to promote awareness, and fund research on the rarest forms of muscular dystrophy. All research will be made publicly available to any and all interested parties because muscular dystrophy of all strains need to be wiped out in our lifetime.

​The Foundation for Casey's Cure, Inc. is a federally approved 501(c)3.
Our EIN#: 84-3487838

Checks:

The Foundation for Casey's Cure, Inc. also accepts checks. Please make your check payable to:

The Foundation for Casey's Cure, Inc.
162 Wellington Drive
LaGrange, GA 30241

P.S. Please include your email address so we can add your name to our newsletters.

Zelle:

The Foundation for Casey's Cure, Inc. has its accounts held at Bank of America, a direct participant in the Zelle network. Money is transferred directly from bank to bank through a secure inter-bank network. (Fees may apply so please read their fee disclosure here.)

You can find us by using our email address:
caseyscurefoundation@gmail.com

Thank you to our special donors! They truly belong in our Warriors for Casey club!

Our Social Media Fans are our largest body of donors!

The Chaudhry Family (2023)
Hillside Montessori School, LaGrange, GA (2022)
Laura Kate Rambo, LaGrange, GA (2022)
Lee Morgan, JetPolymer Recycling (2021, 2022)
Dr. Sandy Simmons (2020, 2021, 2022)
Blair and Laura Harlin (2021, 2022, 2023, 2024)
Sonia McRae (2021,2022, 2023, 2024)
Richard Arnold (2020, 2023, 2024)
Christine Ward (2023, 2024)
Amanda Dutka (2022, 2023,2024)

You can help save my daughter's life and hundreds of others with similar rare neuromuscular diseases.

Please make a generous gift to support Casey's-Cure and the rare disease community and give 25 million Americans a voice. (This link will take you to our secure donation link through Stripe.)

Casey's Cure on Daily News
IG Hope Rises

When you contribute, you're safeguarding the future of sons, daughters, and grandchildren throughout the HMERF community. The science is on the brink of success, and we're so close, but we require your support to make it happen. Although HMERF is a rare condition, incredible patient groups worldwide have fought tirelessly for decades. The breakthroughs we're witnessing today are a direct result of their early research investments, which are now bearing fruit.

Your donation creates a tangible impact that you'll witness within your lifetime. Your financial support fosters collaboration to defeat the genetic threat faced by hundreds of families today and in the years ahead.  In 2024, 95% of each donation has gone directly to fund the research. 

Will you stand with us and be the force that changes her world?

When you give...

You Stand Up for Rare Disease Patient Research

Your money goes to researchers and projects that forward the understanding and development of treatment and cures for patients with rare diseases.

Your gift saves lives... please give now...

You Work To Pass Legislation

You work to pass legislation that protects patients with rare diseases and gives them a chance for the life we all deserve to live.

Contact your state and federal legislatures and urge them to support bills that protect and accelerate the finding of treatments for the rare disease community. Your voice matters!

You Give A Voice

You give a voice to rare disease patients on Capitol Hill each year in collaboration with EveryLife, RDLA, CureCMD Team TITIN, and others. By pooling our resources with others with similar goals we create a powerhouse of support that moves the research along finding solutions quicker- - saving lives.

Follow us on Social Media!

About The Foundation for Casey's Cure for HMERF

The Foundation started in September 2019 by Casey's mom. After witnessing how the disease took Casey's dad's quality of life, she couldn't let the same fate befall her daughter.

Casey's mom and her stepdad moved from NJ to LaGrange to support Casey's family, prioritizing being close for family assistance as the disease's speed was unpredictable.

Upon moving to LaGrange, GA, Casey's mom realized no HMERF research was being done, unlike when Casey's father was ill in 2004. This was a new era, a time for significant advancements.

Determined to make a change, she launched the Foundation for Casey's Cure, Inc in September 2019. Officially recognized as a tax-exempt organization on June 5, 2020.

HMREF, a rare Muscular Dystrophy, causes severe muscle loss leading to respiratory and overall physical issues over time, resulting in a distressing demise.

This genetic illness is an uncommon type of Muscular Dystrophy. Gradually, it causes severe muscle loss, leading to breathing and overall physical problems, ultimately resulting in a painful and distressing passing.

Casey's Cure Work for HMERF

Casey's Cure on Daily News
Casey

Our Vision

Inspired by the challenges of her diagnosis in 2016, we embarked on a transformative journey. Recognizing the absence of dedicated support for HMERF, we boldly embraced the opportunity to pioneer a new path.

Our vision is to shine a light on Hereditary Myopathy with Early Respiratory Failure Muscular Dystrophy. With dedication, we strive for a world where awareness and knowledge bring change. We empower individuals and families, uniting them in a strong community. We're moving forward toward a future of understanding, compassion, and transforming lives through support and shared understanding.

Our Mission

Our mission is to

  • serve as a dedicated advocacy platform for individuals grappling with rare diseases, exemplified by Casey's unique form of Muscular Dystrophy. We are committed to propelling worldwide research efforts focused on her specific subtype, which originates from a genetic anomaly within the Titin protein.
  • Through our unwavering commitment, we aim to raise awareness, amplify support, and foster collaboration to advance knowledge, treatments, and improved quality of life for those affected by these rare conditions.
Non Profit Verified

Why Support Casey's Fight?

Because her fight is everyone's fight...

The life of rare disease patients and care givers is a complicated, draining experience, leaving many of us overwhelmed by our daily tasks with little or no time to understand the legal and legislative fight taking place in our federal and state congressional hallways; fights that touch and change lives of the rare disease community...

  • The Foundation is actively supporting legislative work to improve patient access to services, support, and research at the federal and state levels for all disabled, Medicare, Medicaid and Medical patients; what touches one, touches all...
  • The Foundation collaborates with Experienced Leaders and Lifelong Healthcare Advocates for Muscular Dystrophy Research
  • Additionally, Casey is personally
    • Highly regarded in her patient care work
    • Received Accommodation for her outstanding dedication to patient care
  • She has become a Champion for Patient Rights after seeing how others continue to struggle for needed additional services
  • Actively supports community events that celebrate Rare Disease Day Awareness on Lafayette Square in LaGrange GA
  • Returning Student to further her nursing studies: she's not giving up her life to this disease.
find-a-cure-logo-2
Casey's family
I support rare disease day

Rare disease patients... don't have time for the 15 year drug cycle to save their lives

Time is not a luxury for patients battling HMERF MD and other rare afflictions. Casey's time is slipping away – the urgency to rescue our daughter is paramount, and it's pressing. HMERF is an unforgiving ailment, its grip unrelenting.

The breakthroughs we seek are within reach, and the scientific puzzle is nearly solved, but it's funds that will bridge the gap, delivering the crucial science into the hands of those who need it most – the patients.

Why Now?

We have raised more than $100,000 to get the research and cell lines created.  In order to take, the next step, we need to ask you if you can give again to move this research along.

I am HMERF and this is what I look like
This is what my science team at EverlumBio Lab in Austin TX is working with in order to create a drug that will alter this DNA and make the broken gene history.

About HMERF

Gene #60368, Exon 344, and also known as MFM9

It's known by different names, but they all mean the same thing...

Hereditary Myopathy with Early Respiratory Failure Muscular Dystrophy(HMERF, pronounced H-MERF) is a progressively debilitating disease caused by weakness and muscle wasting across the legs, hips and respiratory tract. This genetic disease is a rare form of Muscular Dystrophy. Over time, this excessive muscle wasting will result in respiratory and overall physical complications leading to a painful, suffering death.

HMERF belongs to the Titinopathy family because the genetic error is located on the Titin gene at exon 344.  Read more about Tintinopathies here.

Breathing and Neuromuscular Disease

Taken from www.breathewithmd.org

Breathing Muscle Weakness in NMD
Simply put, in Neuromuscular Disease (NMD), as muscle-wasting progresses, the muscles involved in breathing (diaphragm and intercostal muscles) can weaken. More specifically, the ability of the lungs to expand and take in Oxygen (room air) and exhale the waste product of that air (Carbon Dioxide or CO2) becomes difficult as these processes involve the use of muscles. This causes a gradual increase in Carbon Dioxide levels in the lungs and blood (hypercapnia). The ability to clear lung secretions (mucus) by coughing forcefully becomes impaired as well, putting the individual at risk for developing respiratory infections and mucus plugging (when bronchial secretions accumulate and obstruct airflow). This can lead to respiratory infection and can progress to pneumonia.

Weak breathing muscles cause risk for respiratory failure, the most common cause of death in those living with NMD. Today's advances in medical care makes this complication manageable through the use of respiratory muscle aids (i.e. a Bi-level device such as a BiPAP or portable ventilator and a device often referred to as an insufflator/exsufflator or cough-stimulating device such as the CoughAssist by Philips Respironics).

Understanding How Breathing Complications Develop
When breathing issues begin for an individual living with NMD, they often show up in the form of sleep-disordered breathing, causing the individual to awaken frequently throughout the night, awake with morning headaches that go away after being awake for a few minutes; and this sleep-disordered shallower breathing can cause progressively worsening daytime sleepiness and fatigue.

But how can NMD affect your breathing in the first place? Most progressive breathing problems develop because of one or more of the following reasons.

  • The individual has a smaller lung volume where the chest has less room to expand due to respiratory muscle weakness or
    a recent loss of the ability to walk.
  • The individual has respiratory muscle weakness that is causing a weakened cough not powerful enough to clear lung secretions.
  • The individual has swallowing problems due to weak throat muscles causing food to go down the wrong way.
  • The individual's disease has caused a physical change to the skeletal structure of their body such as scoliosis (a progressive curving
    of the spine) that has limited the chest cavity size and shape, meaning the lungs can’t grow and/or expand normally.

If you have NMD or a loved one does and you have any questions about breathing muscles being influenced by any of the above, please make it a priority to schedule an appointment for a respiratory evaluation with a Neuromuscular Disease specialist who understands the breathing issues associated with Neuromuscular Disease. These are commonly found at university based hospital systems.

For more information on breathing issues in NMD, we recommend Muscular Dystrophy Canada's Guide to Respiratory Care for Neuromuscular Disorders available at http://muscle.ca//home2/caseysd3/public_html/wp-content/uploads/2012/11/RC13guide-E.pdf. We find it easy to understand and comprehensive in the information it includes.

Note: The following are Neuromuscular diseases that can result in chronic alveolar hypoventilation (under ventilation that can result in elevated Carbon Dioxide, CO2, in the blood).

Myopathies

Symptoms

Footnote: The Foundation gratefully acknowledges this information taken from Breathe with MD, Inc's website, www.breathewithmd.org.

Events

Let's have a coffee together...

As the CEO, I am always interested in meeting our donors, sponsors, and neighbors who want to know more about Casey or The Foundation. Please reach out to me by phone, text, or email and we can meet up for coffee... LaGrange has GREAT coffee and lunch spots to choose from!

So many thanks go out to our sponsor and leader Vince Blevins from GA8 Red Knights!
So many thanks go out to our sponsor and leader Vince Blevins from GA8 Red Knights!
Celebrated Rare Disease Day, Feb 28, 2022 at Beacon Brewery Fundraiser! Thanks to all who supported us!
Celebrated Rare Disease Day, Feb 28, 2022 at Beacon Brewery Fundraiser! Thanks to all who supported us!
Thanks to the bikers who rode in our 2nd Annual Ride for Casey's Cure!  We love you and our sponsor, Red Knights GA8 !
Thanks to the bikers who rode in our 2nd Annual Ride for Casey's Cure! We love you and our sponsor, Red Knights GA8 !
Join us at Lafayette Christian Academy on Feb.  24, 2023 between 10 am and 2 pm.  Free Event!
Join us for a community celebration of Black History Month and Rare Disease Month!! Join us at Lafayette Christian Academy on Feb. 24, 2023 between 10 am and 2 pm. Free Event!

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Contact Us

We hope you will reach out to us to learn more about Hereditary Myopathy with Early Respiratory Failure or to learn more about Casey and our foundation's work.

Foundation For Casey's Cure, Inc

Attn: Chris Duane, Founder/ Executive Director
162 Wellington Drive
LaGrange, GA 30241-8834
contact@caseys-cure.org

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