Hyperoxaluria
Awareness Week

My hope is that every family with a primary hyperoxaluria connection has access to care, treatment, and diagnosis. Spread the world to help make this possible!

FROM: Mariella

My hope is that all patients will have access to life saving treatments around the world.

FROM: Kim

I’m inspired everyday by this community to keep working towards a world without Hyperoxaluria! Everyone join #Hyperoxaluria Week 2022! Together we can make a difference!!!

FROM: Julie

In addition to access to care, I wish for additional access to education!

Publications, research and data on Primary Hyperoxaluria (PH) is so limited and I hope one day information about PH, specifically Type 3, is more accessible. Trying to educate our family and friends on our daughter’s PH3 diagnosis has been difficult as our own knowledge is so limited and we have little supporting resources to share.

I am so thankful for the education the Oxalosis and Hyperoxaluria Foundation provides to this community!

FROM: Mariah

I would like to especially aware parents of developing countries that don’t ignore persistent nausea and vomiting of your infants, toddler and young kids. I feel parents are the main life saver to early identify symptoms and report to doctor. And being a parent, ask doctor for investigation. As in my case my daughter’s symptoms were totally ignore by health team since her birth, no investigation done and once her severity increases she ended up into a formation of unusual calcium oxalate stone. Wishing you a healthy lifestyle to all hyperoaxluria.

FROM: Sehrish

We are a family suffering from ph1 .. my son died of this disease .. and my wife is currently suffering from kidney failure. And my 8-year-old daughter is suffering from this disease, but her condition is currently stable because of the treatments she takes and a lot of fluids

FROM: Nabil

My fervent hope is that everyone afflicted with PH1 around the world will one day have access to life changing drugs, as my dear friends have been fortunate enough to receive.

FROM: Rick

I am in awe of the incredible perseverance and dedication of this community. Thank you, OHF, for all that you do to support patients and families around the world. I am inspired by your work and the patients that you serve. Alnylam Pharmaceuticals is humbled and proud to partner with you for Hyperoxaluria Awareness Week 2022!

FROM: Cara

My hope is that every family and every patient afflicted never give up…be brave and speak out about the condition, your experience, the highs, the lows, and share knowledge of resources.
My desire is for the World to know there is hope!

FROM: Jennifer

Access means the world to us! It means our son has the chance to go to school, play sports, have sleepovers, and be a kid. It means he has experts working behind the scenes to provide him with the best treatment possible while he lives the life a 9-year old deserves.

FROM: Courtney

To embrace the rare and never stop advocating for a cure. Childhood to adult, opportunities are there. Be LOUD and STRONG throughout the journey to understand. Much love to my Special BOYS! Your Mommy loves you.

FROM: Jamie

There is hope and there are resources for your families! With a lot of prayers, connections, and advocating, my two oldest boys (10 & 9) are on drugs that are truly HELPING! One is in a clinical trial, the other is on an FDA approved drug. Don’t stop fighting for your kiddos, it does get better! Join as many advocate groups as you can and never stop sharing your stories.

FROM: Taylor

I have a daughter who is 11 now and her PH is under control, we are very fortunate. I’m Hoping for world where everyone has access to treatment for Primary Hyperoxaluria. Too many people are not able to access medications, life saving dialysis and kidney/liver transplants.

FROM: Mariella

I believe and see a future with a cure that will benefit those inflicted. We as the community are hopeful, that this is not the end. Things will get better, and we shall all rejoice in the end. Let’s all work towards beating this as a community. I lost my son from PH. However today I am part of this community for LIFE.

FROM: Mantsha Jane

The PH Community continues to inspire me every day in my work at Novo Nordisk/Dicerna and it is exciting that the Community has involved itself with companies that are working on various treatments. Keep Hyperpoxaluria Awareness going!!!

FROM: Dave

I hope for everyone with PH to have early and continuous access to adequate medical care and perhaps in a relatively short period of time to find a definitive cure for this condition.

FROM: Sergio Camilo

As a scientist at Alnylam, I just wanted to thank the PH1 community for inspiring us each day!! You are always in our thoughts.

FROM: Dave

to make treatment accessible to all kids with PH1 all over the world and help them live happy and healthy lives.

FROM: Mia

The true Hero’s of this world, are those who actively research, drive to, stand up for, and do everything possible for the one’s they love, when they suffer from a rare disease that goes unidentified or treated. To you and those you love, we stand behind you, aside of you, and with you every step of the way!

FROM: Kimberly

I wish to educate others who have never heard of this rare genetic disorder and bring light to the cause in hopes that with more people aware the better we can fight to find a cure!

FROM: Connie

That everyone around the globe has access to treatment, medication, dialysis, and life saving transplants. Too many people are unable to to access these things currently and we need to change that.

FROM: Mariella

Abigail is a thriving three year old because she has had access to lumasiran, a novel drug in the treatment of PH1. Without it, her life trajectory would be significantly altered. Please consider Abigail’s well-being in your reimbursement criteria for public funding.

FROM: Jennifer

The OHF team is here for you. All that we do is to improve the lives of patients and families dealing with PH, across our wide country, north, south, east and west!

FROM: John

I hope that people whose lives are affected by PH always have a platform to share their voice and be heard. Thank you OHF for all that you do! I will strive to do my part in clearly communicating the scientific research being done.

FROM: Aparna

“New beginnings are in order, and you are bound to feel some level of excitement as new chances come your way.” —Oscar Auliq-Ice, author

May the advances in discovery and treatment for the community continue!

FROM: Trista

I am proud and privileged to work along side the PH community and OHF to bring important solutions to the community living with PH!

FROM: John

This is an abridged submission. Please visit www.hyperoxaluriaweek.ohf.org/story for Kanishka’s full and very powerful story.

In January 2009 – June 2009 a black shadow came to our life with heart breaking news that Kanishka had Primary Hyperoxaluria Type- I. Finally, on 19.1.2011 we received a call from IKEM that Kanishka has been gifted by God for having combined transplantation. On 20.1.2011 very early morning around 5.30 am Kanishka had been taken for his dialysis. But on 19th May 2011 Kanishka didn’t wake up after his dialysis. Therefore, as a bereaved mother I have a request to all the medical practitioners, researchers to identify a better solution than combined transplantation which is really not an ultimate solution. At whatever time I wish to write something about Kanishka the first thing comes in my mind: CARE. He was a very caring personality. To fulfill the cherish idea of a great boy, as a mother and as a parent we established a foundation in 2013 to improve the lives of rare kidney stone disease and Hyperoxaluria for better care and outcomes.

Once again thanks to Kim Hollander for your understanding and giving an opportunity to share our only beloved son Kanishka’s journey with PH.

FROM: Nibedita

We are a community filled with determination and strength. We need to continue to work together to ensure EVERYONE has access to treatment and care for their specific needs, no matter who they are or where they live. This disease affects everyone in the family and can disrupt our lives in ways that are difficult to recover from, HOWEVER we do not have to let it happen without a fight. We are all responsible to advocate for ourselves and our families. Do not settle and never give up. Uncertainty and desperation can motivate us to fight against the biggest challenges. We have a wonderful obligation to each other to keep fighting and pushing forward to ensure we all have the opportunity to live a life free of PH. Lets continue to work together to make good things happen.

FROM: Kristi

I hope to see (geographical) fair and equitable access to treatment and care within the coming years. Access to services that improves overall quality of life for both the patient and parent/caregiver.

FROM: Jess

I struggle when I was Nepal.i never give up and hope so I am here.i connected with PH family.

FROM: Govinda

Having access can mean so much to so many people. Having a great foundation like ohf is extremely handy as I have met many amazing people who understand what I am going through because of them and I am also able to help them however I can from across the globe. It is because of amazing things like this that one day we can hopefully find more cures for diseases like ours and many others.

FROM: Alisha