Future by Design

Future by Design is a group of adults living with cystinosis who’ve come together to pave a brighter future for the teens and adults touched by our rare disease.

We’ve created this Outreach Program to connect individuals and to build relationships within the cystinosis community. Most importantly, we want you to know – you are not alone.

We are here to help make your cystinosis journey easier. Please take a look at our outreach volunteer bios and contact us today! We can chat through text, email, phone calls, and in-person visits based on what’s best for you.

Outreach volunteers can provide access to cystinosis resources, videos and tips from Todd Bradley, and access to Child Life Specialist, Amy Black, equipped with coping techniques, understanding hospital experiences and general life with a rare disease. Check out our Future by Design video.

We want to be a helpful resource for the cystinosis community. Please feel free to reach out with questions or if you just want someone to talk to.

Meet the Future by Design Outreach Team

Aimee Adelmann

aimee adelmannHi, I’m Aimee, I was diagnosed with cystinosis at 14 months and now at 32 I am a thriving, two time kidney transplant recipient. I have been through my ups and downs and spent a lot of my twenties in and out of the hospital. After my second transplant my life changed and I think I became a better person. Today I feel I am where I am supposed to be. I am a career driven individual and have had a successful career in the industry of donation and transplant for almost four years. I am currently the Director of Education and Outreach at Donate Life Northwest with a large portion of focus in living kidney donation and providing better education to patients. When I am not working (which is not very often) I enjoy the outdoors in the Pacific Northwest and volunteer with different organizations including the CRN. My hope is that with the Future by Design Outreach Program we will provide and encourage future generations to succeed in life – whatever that may be. I am happy to talk to anyone, and I am an open book- you can ask me anything. You can reach me on email at: This email address is being protected from spambots. You need JavaScript enabled to view it..


Todd Bradley

Todd BradleyHi my name is Todd, I was diagnosed with cystinosis at 11 months. I'm now 31, looking forward to my 32nd birthday, and considering myself lucky to be here. I feel strongly about all who are affected by cystinosis, including those with the disease and their family members. But I have some different viewpoints.

Many of those with cystinosis say "cystinosis doesn't define me" but that really frustrates me! I have found my purpose in life through this disease. I have met great and caring people, found a place where I belong, feel comfortable in a place I can make my mark in the sand. You all have inspired me to be grateful, to have courage and confidence, and to know that I have an army behind me. You give me strength to look forward to the next day.

Yes, having cystinosis sucks but it does define me! It defines me in a good way, as a passionate and compassionate individual, willing to give advice, share experience, laugh or cry, be a friend, or help in any way I can. Please contact to me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 864-313-1440.


Johnny Davis

Johnny DavisMy name is Johnny Davis. I grew up in Astoria, Oregon, and am currently living in Sequim, Washington. I am 26 years old and was diagnosed with cystinosis when I was two years old. I used to have a feeding tube for a few years when I was younger due to trouble eating. When I was 14 I had a kidney transplant with my mother as the donor. That kidney lasted 10 years until due to my own non-compliance (not taking my medications), my kidney went right back into rejection. I have since been on dialysis for almost 2 years. I am currently working on getting my two-year degree online while I work on getting my second transplant. My hobbies include music, video games, traveling, hanging out with friends and playing foot golf. I really want to be a mentor so I can hopefully help those younger than me not make the same mistakes I made growing up with cystinosis. I want to see the next generation thrive in the areas that I and my fellow patients maybe have not. Please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 503-410-8036.


Tyler Griffin

Tyler GriffinMy name is Tyler Michael Griffin and I’m 26 with cystinosis. My birthday is August 12th. I was born in Germany on an American military base. I’ve had my ups and downs with cystinosis, but at this point in my life I’m doing well. Overall, cystinosis has made me a stronger person and I would like to help others. My email is This email address is being protected from spambots. You need JavaScript enabled to view it. and my phone number is 585-307-0960.


Jana Healy

Jana HealyMy name is Jana, I am 33 Year old with cystinosis. I was diagnosed at an early age and also have a twin sister, Sara, with it as well. We always had each other to lean on to help us through the tough times and I would love to share that gift with others, know you are not alone and I am here help. I can be contacted by email This email address is being protected from spambots. You need JavaScript enabled to view it..


Sara Healy

Sara HealyMy name is Sara Healy and I'm 33 years old. I went to culinary school, I love to cook and sing. I have lived with cystinosis my whole life. I was basically treated differently by my classmates from Junior High to High School. It was a very emotional time in my life where I felt so out of place and different when all I wanted to do was fit in. One thing I did have was my twin sister Jana. She also has cystinosis so I always had someone to confide in and relate to. It helped me get through that period of my life and keeps me going strong to this day. That’s why I want to do this. I want to help people with rare conditions not feel so alone and to know there will always be someone to turn to when they feel alone. Please contact to me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 701-770-2635.


Eddie Langley

Eddie LangleyHello, my name is Edward C. Langley Jr, (AKA Eddie). I was born on December 9th, 1978 and was the second child born with cystinosis in my family. My sister was born 6 years before me but passed away when she was 10. I have an Associate’s degree in culinary arts and also feel that my life experiences, both positive and negative, provide me with wisdom beyond my years. Many people feel I am a good listener and come to me for advice and compassion. I am willing to discuss anything. I always try to speak the truth and believe that the truth helps us all learn and grow. I promise that I will keep your information private if you want to speak to me about difficult topics. Please email me at This email address is being protected from spambots. You need JavaScript enabled to view it..


Melea Martin

Melea MartinI am 35 years old living with cystinosis. I reside in Ohio with my husband Jim and daughter Claire. I went to school and received my Associate’s degree in Early Childhood Education. I love art and photography. I work at a preschool/daycare and enjoy working with young children, exploring and learning new things. Painting with the younger ones (even the one year olds) is one of my favorite activities at work. I love to shop at Target, unique local shops, and any bookstores. You can reach me at 330-766-3048 or This email address is being protected from spambots. You need JavaScript enabled to view it..


Jim Martin

Jim MartinI am 48 years old and married to Melea Martin who has cystinosis. I work at GM and Mindrocket. Born and bred in Ohio. Studied Music at Youngstown State University. My email is This email address is being protected from spambots. You need JavaScript enabled to view it. or call 330-766-3048.


Emily Mello

Emily MelloHello! I’m Emily, 30 years old with cystinosis. I was born in Brazil and then moved to the United States when I was four. Growing up I was into everything as a kid; rollerblading, skateboarding, and all the fun stuff in the 80’s and 90’s. I remember saving up for a PlayStation and till this day I love playing video games! I had my first kidney transplant at ten years old, and it lasted me 10 years. I kept my summers busy by traveling the world. I got married at 18 and was married for 2 years, I had a miracle baby boy, Elijah, who means the world to me. I am so grateful for everyone in my life. I love getting to know people, joking around, listening to music and just enjoying and grasping everything that life has to offer. I am a kid at heart and love new adventures and love being a mommy! Hit me up anytime, 203-531-1733.


Alison Moreno

Alison MorenoHi! I'm Alison Moreno, married to Ray Moreno Jr. I do not have cystinosis, however Ray does. We met in 2009 on a blind date and got married in 2014. I have a medical background so it was a fairly smooth transition as I have slowly become his main advocate in the medical world (aside from himself). We hope to have children one day but that is not in our immediate future. I would honestly like to be an advocate for anyone who is in need. I think I carry a different perspective than most as I only know about the adulthood experience with cystinosis. We don't let cystinosis run our lives - we continue to follow our dreams regardless. We went to Jamaica for our honeymoon. A concern was: is there medical care if something were to happen? The solution was to get travel insurance that would fly us back to states for any healthcare needs. Ray is a paramedic and is currently enrolled in PA school. There is no dream too big if you're willing to work for it. Not even cystinosis can keep you down. Any parents, significant others, siblings, or folks with the disease are welcome to reach out with any questions or concerns. I may not have all the answers but I can certainly listen and be a friend. Please contact me at (360) 870-2491 or email at This email address is being protected from spambots. You need JavaScript enabled to view it..


Ray Moreno

Ray MorenoGrowing up with cystinosis was not easy. As if dealing with the disease itself was not challenging enough, I also had to cope with the multiple adverse side effects that came along with taking the medications. We all know how terrible the Cystagon was to take.

I have never let my health get in the way of having a fun and fulfilling life. It is easy to let this disease determine how you live your life. I have been successful thus far by taking life one day at a time and not taking anything for granted. Currently I live with my wife, Alison, and our Alaskan Malamute, Jaxon, in Puyallup, Washington. He has enough energy to keep us both on our toes. I was able to earn a Bachelor’s degree, work as an EMT and Paramedic, and even volunteered as a firefighter. I have a goal to get my Master’s and become a PA so that I can help others dealing with chronic disease. In my free time I enjoy spending time with family and friends. I’m a big sports fanatic, so I love anything to do with sports. I follow are the Seattle Mariners, Tacoma Rainiers, Green Bay Packers, and the Duke Blue Devils. Also, I love to watch movies. Some of my favorites are Top Gun, and, anything with Kevin Hart or the Rock. My motto in life was summed up in this quote by Stewart Scott, “You beat a disease by how you live, why you live, and in the manner in which you live.” Please email me at This email address is being protected from spambots. You need JavaScript enabled to view it..


Katherine Morrison

Katherine MorrisonHello, I’m Katherine and I am 27 years old living with cystinosis. I live in Memphis where life revolves around basketball, barbeque, and music! I previously served on the Cystinosis Research Network board and am very excited to be a part of the Future by Design Outreach Program. My goal is to spread advocacy and awareness for the cystinosis community while also providing resources to all effected by cystinosis. I received my kidney transplant in November of 1999 and life has never been the same. I love that I have the energy to be active and pursue all my goals. I am currently earning my Bachelor's degree in Nutrition and have an Associate's degree in Allied Health with a Pharmacy Technician focus. You can reach me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 901-230-6844.


Rebekah Palmer

Rebekah PalmerMy name is Rebekah Palmer and I was diagnosed with cystinosis at 5 years old. In high school I played volleyball along with piano and violin as well as sang in stage productions. I went to college for teaching and while I volunteer tutor teens and adults, I still participate in the arts including the behind the scenes work like reading and writing. I feel community is important for every person’s growth as individuals. Learning is a mutual opportunity and I look forward to lessons mastered with each other. Please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it..


Stephanie Sorensen

Stephanie SorensenMy name is Stephanie Sorensen. I have cystinosis and live in northwest Iowa. I am 30 years old. I have two wonderful children, my son is 9 and my daughter is 3. I am a hair stylist/ assistant manager at Cost Cutters. I had a kidney transplant in 2001. I am the oldest of 6 and the only sibling with cystinosis. I want to mentor because when you are young you don’t always understand the illness or how to have a normal life being a kid. I want to help them understand it can be difficult but you can still be a kid. The disease doesn’t have to take over your life. You can live life how you want it to be! You can have a GREAT FUTURE!! Please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. or call me at 712-334-0504.

Cysteamine Eye Drops

“Living with Cystinosis: A Closer Look”. This video is now available at http://www.youtube.com/watch?v=eT8DB34Ktnk and offers information about the symptoms, impact and management of the ocular effects of cystinosis. In addition, it provides valuable first-hand insights for people with cystinosis about how to fit the condition into their daily lives. Sigma-Tau Pharmaceuticals partnered with CRN in its creation.

Cystaran Eye Drops Now Available

Sigma-Tau Pharmaceuticals Launches Cystaran Today

SIGMA-TAU PHARMACEUTICALS LAUNCHES CYSTARAN™ FOR THE TREATMENT OF CORNEAL CYSTINE CRYSTAL ACCUMULATION IN PATIENTS WITH CYSTINOSIS

GAITHERSBURG, MD, May 1, 2013-Sigma-Tau Pharmaceuticals, Inc. (Sigma-Tau), a part of the Sigma-Tau Group Rare Disease Franchise, announced today the availability of CYSTARAN™ (cysteamine ophthalmic solution) 0.44%, the first and only FDA-approved therapy for the treatment of corneal cystine crystal accumulation in patients with cystinosis. Sigma-Tau developed CYSTARAN in partnership with the National Institutes of Health (NIH) and in cooperation with the Cystinosis Foundation, the Cystinosis Research Foundation, and the Cystinosis Research Network. The U.S. Food and Drug Administration (FDA) approved CYSTARAN in October 2012, and the product has also been granted Orphan Drug status.

CYSTARAN™ Hotline

1-877-534-9627
The CYSTARAN™ Hotline is available to patients, caregivers and physicians in the U.S.
Order Mon. - Fri., 8:00 a.m. - 8:00 p.m. Eastern
Specialty-trained pharmacists and registered nurses available 24 hours a day, 7 days a week.
CYSTARAN is dispensed solely by Walgreens Specialty Pharmacy.

"The CYSTARAN launch marks an important milestone for Sigma-Tau and further demonstrates our proven ability to develop and deliver novel therapies for patients suffering from a wide range of rare diseases," noted Dave Lemus, Chief Executive Officer of Sigma-Tau. "Sigma-Tau is committed to ensuring comprehensive access for all cystinosis patients with corneal crystal accumulation, and we feel especially privileged to be able to offer this critical new therapy which will make a positive impact on these patients' daily lives."

"For the hundreds of children and adults in the United States who suffer from corneal cystine crystal accumulation as a result of cystinosis, the commercial availability of CYSTARAN provides access to a critically needed therapy," commented Craig B. Langman, MD, the Isaac A. Abt, MD Professor of Kidney Diseases and Head of Kidney Diseases at the Ann & Robert H. Lurie Children's Hospital of Chicago and the Feinberg School of Medicine of Northwestern University. "We need to make sure that physicians and patients managing cystinosis understand the risk of eye complications and are aware of the availability of an FDA-approved therapy with documented safety and effectiveness."

CYSTARAN is available as a sterile ophthalmic solution containing 6.5 mg/mL of cysteamine hydrochloride equivalent to 4.4 mg/mL of cysteamine (0.44%). For full prescribing information for CYSTARAN, see www.cystaran.com.

Safety: The most frequently reported ocular adverse reactions occurring in ≥10% of patients were sensitivity to light, redness, eye pain/irritation, headache, and visual field defects.

About Cystinosis

Cystinosis, a genetic disease which affects approximately 2,000 individuals worldwide, is a rare, life-threatening condition in which the body accumulates the amino acid cystine (a building block of proteins) within cells. Excess cystine leads to formation of crystals that can build up and damage cells throughout the body. Cystinosis slowly destroys numerous vital organs including the kidneys, liver, eyes, muscles and the brain. Other complications of cystinosis include muscle weakness, diabetes, hypothyroidism, difficulty in swallowing and rickets. Corneal cystine accumulation can lead to ocular complications such as squinting, foreign body sensations, changes in visual acuity, corneal haziness and photophobia (i.e., sensitivity to light). The clinical safety and efficacy of CYSTARAN has been evaluated in controlled clinical trials conducted by the NIH in approximately 300 patients.

About Sigma-Tau Pharmaceuticals, Inc

Sigma-Tau Pharmaceuticals, Inc. is a U.S.-based, wholly owned subsidiary of the Sigma-Tau Group, and is dedicated to the global development and commercialization of medicines for patients with rare diseases. Sigma-Tau Pharmaceuticals, Inc. is based in Gaithersburg, Maryland. Since 1989, the company' s products have been focused on kidney disease, certain genetic disorders and cancers. With more than 7,000 identified rare diseases that affect approximately 30 million patients in the U.S. alone, Sigma-Tau places its considerable scientific resources behind the development and commercialization of compounds that benefit the few. The company has a substantial development program focused on transplant, cancer, inherited genetic disorders, malaria, and other areas of unmet medical need. For more information about the company, visit www.sigmatau.com.

Sigma-Tau Contact:

Lesli King
Senior Manager, Patient Affairs
Sigma-Tau Pharmaceuticals, Inc
Phone: 301-670-5450
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Paula Schwartz
Senior Vice President
Rx Communications Group
Phone: 917-322-2216
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Additional Information

Cystaran Ordering Information
Cystaran Enrollment Form
Cystaran Prescribing Information

crn eyedrops

National Institutes of Health (NIH)Eye Clinic

Alana Temple, RN
Clinical Trials Coordinator
Phone: (301) 402-1369
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Photo Gallery

2017 Conference

Day 1

Day 2

Day 3

2015 Conference

 

2013 Conference

You can view additional photos from the Conference taken by Sarah Dawson Photography at her website here. The password to view the photos is crn2013.

Thursday Reception

Friday

Saturday

2011 Conference

2009 Conference

2007 Conference

2005 Conference

Scholarships

Each year the Cystinosis Research Network (CRN) provides scholarship opportunities for students currently enrolled in or preparing to begin an accredited collegiate or vocational program. Financial assistance of $1,000 will be awarded to one student diagnosed with Cystinosis and $1,000 to a student with a sibling diagnosed with Cystinosis. For information, contact Terri Schleuder at This email address is being protected from spambots. You need JavaScript enabled to view it..

2018 Scholarship for an Individual Living with Cystinosis

APPLICATION

2018 Sierra Woodward Sibling Scholarship

APPLICATION

 

The 2017 recipients are Emily Patterson (CRN Scholarship for an Individual with Cystinosis) and Tyler Morrill(CRN Sierra Woodward Sibling Scholarship). Emily is attending Central Carolina Community College for Early Childhood Education. Tyler is at Miami of Ohio majoring in Kinesiology with plans to become a Physical Therapist.

 

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Congratulations to the past CRN academic scholarship recipients!

CRN Individual Scholarship Recipients

2017
Emily Patterson
2016
Shea Hammond
William Patterson
2015
Garrett Thomas
2013
Elizabeth Patterson
2012
Devin Adorjan
2011
Katie Ahnen
Mikaela Gard
Weston Tschannen
2009
Shannon Keizer
2007
Steve Schleuder
2006
Kelly Bryant

CRN Sierra Woodward Sibling Scholarship Recipients

2017
Tyler Morrill
2016
Alex Greeley
2015
Kasey Hohl
2014
Caroline Larimore
Jack Wyman
2013
Kole Binger
2012
Matthew Ahnen
2011
William Tschannen
2010
Nikolaus Gard
Laurin Friend
2008
Ashley Shaw
2007
Allison Tschannen
Kelly McCalla
2005
Tahnie Woodward
Allison Abedini

Families In Your Area

Looking for other cystinosis families in your area? With cystinosis being a rare disease, the members of our community are spread all over the world. Sometimes we tend to feel isolated and alone in this journey. If you are interested in networking with other cystinosis families in your area, please complete the form below and someone will contact you.

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Support Groups

The Support Groups are an easy way to communicate with the cystinosis community using Yahoo Groups.  Yahoo Groups are a way of communicating by email to many people that belong to the same group. CRNSupportGroup and Cystinosisteensupport are the two cystinosis Yahoo Groups affiliated with the Cystinosis Research Network.

crn groups

Cystinosis Support List

For parents, affected adults, caregivers, family, and friends. We also welcome researchers and medical professionals who are interested in cystinosis. This is the place to discuss the various aspects of cystinosis, and how it affects our lives, how we cope with it, vent our frustrations, share our fears, our hopes, and dreams.

Cystinosis Teen Support List

For teens with cystinosis and teenage siblings of children and adults with cystinosis. Connect with other teenagers who are dealing with similar issues. The posts include questions, concerns, ideas and supportive sharing.

 

If you would like to subscribe to either of these lists please fill out the form below. We require you give your name and address to avoid subscribing salespeople and other undesirables to the lists. Your information is kept confidential.

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  1. Stay up-to-date with the latest information from the Cystinosis Research Network by joining our email list.

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