From Clinton Moore
Often, fathers are not the main caregiver in the family. The fathers head off to work every day leaving mom to care for their child. This isn’t always the case, but often is. Some may think that while the fathers are away, it gives them a break from the constant care that cystinosis requires. That is far from true. Yes, fathers get a break from the hands on care but the wonder and worry never ceases. Fathers often are working while patiently waiting for a phone call from home to let them know how an appointment went, test results, what the next plan of action is, or maybe just how their child is feeling that day.
Fathers may also hide their feelings and emotions from the rest of the family. Fathers are looked at as the "strong" one in the family and when he shows fear or worry then everyone is scared and worried. Please know, although they may not show it, fathers are worried, concerned and scared just like everyone else. Fathers often wait until they are alone to let their emotions out. This may be in the form of tears, just sitting and thinking, or maybe punching a wall. Regardless, it will come out.
The Cystinosis Research Network would like to wish all the fathers a very special Happy Father’s Day. We appreciate all that you do for your family and recognize all the sacrifices you have made. We understand and know first-hand that you secretly hurt, and worry and we want you to know that, although silent, we hear your screams. We want you to know that we are here for you in whatever capacity is needed. We’ve got you.
May your day be worry free. Happy Father’s Day!
This year our community will celebrate the first annual Cystinosis Awareness Day on May 7th. The goal is to educate our family, friends, healthcare teams and general population about cystinosis.
It is estimated that at least 2,000 individuals worldwide have cystinosis, though exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed. Now is the time to improve diagnoses, improve treatments, advocate for our children and ourselves, and become relentless in our mission until a cure becomes a reality.
May 7th (5.7) was chosen to represent the most common cystinosis mutation: 57-kb deletion.
Stand with us on May 7th to make a difference in the community. Here’s how:
Spread cystinosis awareness on Rare Disease Day, Cystinosis Awareness Day and all year long!.
We've created a sticker to help family and friends communicate the importance of raising cystinosis awareness and education through any gesture - big or small.
Dear Friends and Family,
The holiday season is always an exciting period. Celebrating all of the blessings bestowed upon us individually and collectively. We have a spring in our step as we go about making preparations for the holidays. A most important action our family does is to reach out to those less fortunate. We look for opportunities to support worthy organizations not only financially but in action as well. We do this with a sense of responsibility. We do this to show our children the importance of kindness and caring for others. It is in this spirit we respectfully request you to consider The Cystinosis Research Network
(CRN) in your holiday gift giving.
CRN is an all-volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance, and educating the public and medical communities about cystinosis. CRN’s vision is ultimately the discovery of a cure, the development of improved treatments to enhance the quality of life for those living with cystinosis.
Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to
accumulate in various organs of the body. Without specific treatment, children living with
Cystinosis have a significantly compromised life span and quality of life.
Thankfully, advances and successes continue to be made: children are living longer, pursuing higher education, entering into marriage and pursuing professional careers. Throughout it all though, what remains consistent in their lives is the knowledge this disease has significant control over their very existence. Imagine taking in excess of 50 pills on a daily basis; imagine knowing that kidney transplants are inevitable; imagine living with the knowledge your lifespan is abbreviated. How do you respond to a comment such as this...”Dad, I have to live my life on an accelerated basis because I will not live as long as you”.
Every day we hold onto the hope that one day there will be a cure. Until then, we continue to fight. Advocating for medical research to identify new treatments to improve and prolong their lives. It is in this spirit we ask you to honor friends and loved ones with a donation https://cystinosis.org/how-to-help/donate. Your gift will enable CRN to continue to positively impact and assist individuals and families afflicted with this rare disease. With these thoughtful gifts, you will not only make a lasting impact on people that are in need but you will also be positively advancing research; more importantly, you will be giving hope.
Our 2017 Fall/Winter Newsletter provides numerous examples of how your support would be used: http://bit.ly/2B48pcK. Read the ASN article to learn of how we heighten medical service providers understanding of this rare disorder (page 28). Read about our 2017 CRN Family Conference to get insights as to challenges our families face and how we learn and support each other (page 1). Read about how Eddie Langley’s cystinosis journey has inspired our children to grow into responsible, caring and productive individuals (page 20). None of this would be possible without your support.
Best wishes to you and your family for a safe and festive holiday season.
Leadiant Biosciences, Inc. is pleased to share with the cystinosis community that Cystaran® (cysteamine ophthalmic solution) 0.44% will be available for order early next week. We have heard your frustrations, and we apologize for the interruption in product availability you may have had. Getting Cystaran back to you has been our top priority. The product shortage was the result of unexpected delays with manufacturing.
On Monday, August 14, Walgreens Specialty Pharmacy will be contacting patients to schedule shipping and delivery of Cystaran. If you received 2 bottles, you will receive the balance of your bottles to make your monthly order whole. If you were placed on the back-order list and received 0 bottles, you will be shipped your full monthly supply.
We greatly appreciate the Cystinosis community’s patience and understanding while these manufacturing challenges were resolved.
For additional questions or to order Cystaran, please contact Walgreens Specialty Pharmacy at 1-877-534-9627.
Receive your FREE copy of the Cystinosis comic book series by completing the form below. Once submitted, you will receive each installment in the trilogy as they become available.
Kevin McCalla became passionate about storytelling, specifically comic books, at a young age. Diagnosed with Cystinosis at 13 months, Kevin has translated his experience living with Cystinosis into a relatable, enjoyable, and educational resource.
Kevin lives in Kerrville, Texas with his wife of 9 years, and their 4 cats.