Hyperoxaluria Warriors around the World
November 4-9, 2024
Hyperoxaluria
Awareness Week
Raising awareness and generating change for people worldwide living with hyperoxaluria, their families and caregivers.
US
Your strength, resilience, and courage inspire us every single day. This journey isn’t easy, but together we’re raising awareness, pushing for better treatments, and supporting each other through every challenge. Keep fighting, keep hoping and know that you are never alone in this battle. #hyperoxaluria
FROM: Kim
CZ
Our beloved SON ” KANISHKA BINAYAK SAHA” & His beloved Father: Krishna Kanta Saha
My All Family Members & Oxalosis Hyperoxaluria Foundation.
Feeling for Healing
Ph Global summit was-
Feeling for healing, the unbearable pain.
Ph Global summit was-
Feeling for healing, much information to gain.
Ph Global summit was-
Feeling for healing, and we met each other
The PH fighters are the real warriors.
We share our son Kaishka’s story,
That makes us happy and life gets glory.
We share our opinions and views,
That brings a piece of great news.
We create a new Community Group,
None other than the PH group.
Ph Global Summit presented us with a family,
Who sends us blessings of heavenly.
Kim Hollander and Julie Bertarelli
You are our Dear, even though you are far,
But we feel like you are always near.
Thanks to the Oxalosis & Hyperoxaluria Foundation
For providing this wonderful Scope.
To present the Kanishka Binayak Memorial Foundation
Which is our life’s only Hope.
FROM: Nibedita
IT
Tutti Insieme per sostenere la ricerca che è la nostra speranza di vita è il nostro futuro
FROM: Luana
IT
Combattiamo insieme ai ricercatori per un futuro migliore !
FROM: Caterina
US
Dalton K,
Stay strong young man. You have just begun your life. Keep your focus on the future. You have everything you need to win this battle called “life” inside of you. My prayers are with you and your sweet wife. May God Bless you.
Lisa Harvey
FROM: Lisa
US
Tiffany R.,
You are a ray of sunshine! Your sweetness and kindness shine through all the pain and difficulty you have had and make all those around you feel better. May God bless you and your family.
FROM: Lisa
US
You are strong! You are brave! You have a community of support to help you and you are not alone. It will be ok!
FROM: MaryLynne
GB
We will all get through it
Keep strong everyone
FROM: Jake
IT
we’ll keep fighting togheter!
FROM: Giorgia
IT
Non ci arrendiamo e continuiamo a combattere sostenendo e mettendoci a disposizione della ricerca
FROM: Doranna
US
Remember, you’re not alone. Together, we stand with you—holding hope for breakthroughs, for healing, and for brighter tomorrows. Keep fighting, and know that there are countless hearts cheering you on.
FROM: Julie
US
Thinking of all Hyperoxaluria Warriors in the Hyperoxaluria community around the globe!
FROM: Maya
US
We are Hyperoxaluria Warriors! Thank you to OHF for serving with dedication. Your advocacy is appreciated!!! In honor of Dr. Matthew Breeggemann. We love you! Grandma Jane and Mother Laura.
FROM: Laura
GB
Hyperoxaluria picked the wrong people to mess with as we are stronger and braver than we believe.
Brighter than you think and loved more than you know.
Keep smiling, just remember we will never walk alone.
We are always a stone throw away from being helped now that we are a team of Warriors and together we can get to our Goal.
FROM: Ghulam
US
You are a warrior, you are strong and most of all you are so loved. With the help of the OHF community, we can overcome any obstacle that stands in our way. #hyperoxaluria
FROM: Paulina
US
To all the hyperoxaluria warriors out there: Your dedication and commitment to improving the lives of patients living with this disease is nothing short of inspiring. Keep doing what you’re doing – you truly are making a difference.
FROM: Kari
CH
“was dem Einzelnen nicht möglich ist, das schaffen viele” F. W. Raiffeisen
Wir wünschen allen Hyperoxaluria Kämpferinnen und Kämpfer unterstützende Menschen an ihrer Seite!
Wir sind unsagbar dankbar, für jeden einzelnen der mit uns mitgekämpft hat und es auch weiterhin tun wird!
“What is not possible for one person, many can achieve” FW Raiffeisen
We wish all Hyperoxaluria fighters supportive people at their side!
We are incredibly grateful to each and every one of you who has fought with us and will continue to do so!
FROM: Deborah
DE
A Message of Hope from a Libyan 🇱🇾 – German 🇩🇪 Kid Living with PH
Hi everyone,
I’m 14 years old, and I have primary hyperoxaluria (PH). I’m Libyan and German, and there was a time when PH made things really tough. I had to be careful with my health, and it felt like everything was about managing my condition. But now, things are so much better. With the right treatment, my oxalate levels are normal, and I’m back in school here in Germany, living just like other kids. Now, I just have to take my medication, and it has made a huge difference.
I am so grateful to all the amazing people who saved my life at the University Klinik in Essen, Germany. And to OHF, thank you for all the support you give kids like me all over the world. Most of all, I want to thank my family—my wonderful Papa and Mama and my kind brothers. They’ve been with me through everything, and their love and support helped me get to where I am today.
To other kids with PH, I want you to know that even when things feel hard, there’s hope. With time and the right treatments, things can get better. PH is part of our lives, but it doesn’t have to control everything. Stay strong and don’t give up, because there are so many people working to help us live better lives.
So keep going, stay hopeful, and know that life with PH can improve. You’re not alone, and there are people everywhere who understand what you’re going through. I’m here with you, cheering you on, and believing in you.
— A Libyan 🇱🇾 – German 🇩🇪 kid with PH – German 🇩🇪 Kid Living with PH
FROM: Muhammad
EC
Let’s spread awareness for Hyperoxaluria! This is a very rare disease that needs our voice around the world in order to find a cure! I am forever grateful for having a second chance to live. Thank you OHF for being the best foundation in the world💙
FROM: Maria Clara
IQ
My message: As a father of a 10-year-old girl with PH1, and as a husband, my wife also has PH1 and suffers from kidney failure and undergoes kidney dialysis 3 times a week. My message is for everyone to stay together and I pray for everyone to get treatment and enjoy health because it is mentally and physically tiring and very difficult for every family that has a person suffering from this disease. Greetings to all of you. Your friend Nabil… the father of the little girl, Reyam, is from Iraq.
FROM: Nabeel
NO
I am the mother of Kristine who was diagnosen with ph1 at the age of 5 . She is noe 37 years old , mother of two Girls 15 and 12 years old . She has all here life been struggeling with kidney Stones. During the last years a lot of trouble with extra symptomer.
FROM: Asthrid
To the patients, caregivers, siblings, relatives, loved ones of all who suffer from Hyperoxaluria related diagnosis:
We SEE you. We know you are suffering and feeling isolated and desperate for help. We know how challenging it is to get attention from those who are supposed to be caring for your medical needs. We know that many of you live in areas where there is no support or assistance or treatment for this disease. We know you feel you are overlooked and being ignored. We understand your desperation and and fear.
We are working tirelessly for every single one of you. We do not have all the answers but we promise to stay with you at every step of your journey. We promise to work alongside you and with you to help with your specific needs. Please reach out and be part of this community. Do not suffer alone or in silence. Our PH Community is STRONG and DETERMINED. You are NOT alone. You MATTER. There are so many people who are fighting for you.
Be STRONG. Have HOPE. Stay CONNECTED.
-The Ouimet Family
Kristi
Kelly
Carswell
Patrick
Matthew
FROM: Kristi
US
Hyperoxaluria can be a battle that no one knows you’re fighting. It may not be noticeable on the outside, even on bad days. Take care of yourself, remember to advocate, remember to raise awareness and remember you have a whole community behind you.
FROM: Mariella
Send your Postcard and Share Your Message of Strength!
Join Hyperoxaluria Warriors Around the World Show Your Solidarity Today
Take Part Today!
Let’s spread hope and build a global family! As a member of our hyperoxaluria community, you’re not alone. Share where you’re from to connect with fellow warriors from all over the world. It’s easy!
We’re all in this together, and by connecting, you’re helping us raise awareness and making our community stronger. Together, we can make a real difference in the battle against hyperoxaluria. Let’s inspire hope and create a united global community.
HAW 2024 Calls to Action
Help Change the Future of Hyperoxaluria
Miles for Miracles!
Our urgent mission: Exceptional care, research, awareness, collaboration, sustainability, and legacy for Hyperoxaluria patients, reducing travel, increasing access to leading experts and critical care.
Join us today and be a part of building hope and shaping a brighter future for hyperoxaluria. Make your pledge today!
Miles for Miracles
Pledge miles and start campaigning today! Personalize your page and then share your campaign
Wear #Hyperoxaluria Blue and Share Your "Why" on Social media
Wear #Hyperoxaluria blue share your story to spread awareness for Hyperoxaluria all around the world! Use the template in the toolkit to share your “why”! Don’t forget to @OHF, if you would like the OHF to reshare your post!
Wear blue and share your story on social media!
Facebook Frame
Make Your Facebook Frame
Join us in spreading Hyperoxaluria awareness on facebook! In the toolkit you will find a facebook frame to spread awareness on Facebook.
Download Materials
Find here all the materials you need to raise awareness for #Hyperoxaluria and instigate change for people living with this rare disease. Download the Digital Toolkit for social media posts, posters, a facebook frame and more!
Share on Social
Share on social media with #Hyperoxaluria to spread awareness. Don’t forget to follow @ohfoundation on instagram, @OHFTweet on twitter, and TheOHF on facebook and sign up for updates!
Making Strides Together in Hyperoxaluria
Hyperoxaluria, a condition that can manifest at any age, is often characterized by elevated oxalate levels and recurrent kidney stones in adults, or kidney stones in children. Get to know the dedicated researchers collaborating with the OHF and driving progress in hyperoxaluria today! Watch the video.