The Levine family just took great steps to STAND UP & BE COUNTED. Meeting with the Congressman, they took just another step for the best representation and advocation for those with Nephrotic Syndrome and FSGS. Sydney Levine, who recently started a viral social media campaign with the #SUBCselfie project, caught the attention of the Congressman as well as many famous, powerful voices across the country. As a result of the Levine family, who never stop trying to find ways to beat FSGS for son and brother, Matthew, the right people are becoming aware and joining in the fight. The Congressman will be taking this to appropriations on the hill next week!
One of the most important things we do at NephCure is connect people to others experiencing similar challenges of living with chronic kidney disease. Whether it be understanding the complexity of Nephrotic Syndrome/FSGS, the side effects of medications, frequent trips to the nephrologist or navigating your way through labs and diets, it can be incredibly overwhelming. At NephCure, we understand the value of connecting patients and caregivers with others to share experiences, frustrations and, better yet, good news!
That’s why we’re expanding our Peer to Peer Support Program. In addition to our online support community, NephSpace, we offer our Patient to Patient Connections (P2PC) program. P2PC is a worldwide organized network of patients and caretakers whose lives have been affected by the diseases causing Nephrotic Syndrome and FSGS. It is designed to connect individuals via email or phone based upon any or all of the following: diagnosis, symptoms, and complications, age of individuals or sometimes specific geographical area. Our volunteer patient/caretaker ambassadors are committed to offering support and sharing their experiences with others who are facing similar challenges. You can learn more or be connected with a patient/caretaker ambassador here https://nephcure.org/?p=1390.
We encourage you to take time to make connections with others in similar situations as we know you will benefit greatly from the support and sharing!
If you are interested in becoming Volunteer Patient/Caretaker Ambassador please visit https://nephcure.org/get-involved/become-a-volunteer/ or contact Kelly Helm at firstname.lastname@example.org.
On the heels of our very successful Advocacy Day, comes this Alert. Please take action before end of day on Friday, March 20
Request that House and Senate Members sign on to letters supporting FSGS research
Members of the House and Senate have drafted letters urging their colleagues in Congress to support medical research on focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome (NS) through the National Institutes of Health and the Department of Defense.
Contact your two Senators and your House Representative to ask them to sign on to the letters. If a large number of Members of Congress express support for research on FSGS/NS, federal agencies will respond by continuing to prioritize their FSGS/NS research portfolios.
To determine your two Senators: Visit www.senate.gov, and select your state in the drop-down menu on the top-right corner of the webpage. Click ‘go.’ Your two Senate offices will appear with their DC office phone numbers and webpages.
To determine your House Representative: Visit www.house.gov, and enter your zip code in the box on the top-right corner of the webpage. Click ‘go’ and a link to the webpage of your House office will appear. You may need to enter your full address if more than one Representative is listed.
- Call your two Senate offices and your Representative’s office.
- Tell the person that answers the phone that you are a constituent.
- Ask to speak with the health staffer and deliver the message below. If you can’t reach the health staffer, it is OK if you deliver the message to someone else or to a voicemail.
- Ask if you can send a follow-up email and request an email address.
- Send a follow-up email based on the message below.
Recommended Message – [brackets] indicate where to insert specific information:
- “I am a resident of [CITY]. [Cite any meetings you may have had with the office.]
- I am contacting you to request that your office sign on to a letter supporting research on FSGS. The closing date is March 23rd.
[In the Senate: “The letter is led by Alex Graf in Senator Stabenow’s office”] or [In the House: “The bipartisan letter is led by Dante Cutrona in Rep. Costello’s (R-PA-6) office and Joel Richard in Rep. Deutch’s (D-FL-21) office.”]
- FSGS and the diseases that cause nephrotic syndrome are devastating kidney diseases. FSGS is a leading primary glomerular cause of end-stage renal disease.
- [Briefly tell your story as a patient, parent, caregiver, etc.]
- I hope you will sign on to the letter supporting FSGS research before March 23rd.
- Please keep my posted on the actions you take. You can reach me at [phone and/or email].”
Thank you! Feel free to forward this information to friends and family members as well. Every call helps!
Wow. I mean, WOW!
The last two days are the reason I do Government Advocacy! We had 37 people there – comprised of 5 staff members, 1 board member, 14 different families, children aged 2-16, a Mayor and even parents whose son passed away from complications of a transplant. These are our constituents, these are the faces of NS/FSGS. I was so proud, excited, energized by these families who traveled (many from the west coast!) to be here, tell their story and STAND UP & BE COUNTED for their loved ones!
We are so grateful and we thank each and every one of the following participants: Tamekia Bernard, Maria Bradley, Justine Byun, Gregory Byun, Betsy Calloway, Dylan Clancy, Pam Duquette, Lindsay Duquette, Matt Duquette, Richard Fissel, Wayne Hall, Ashlee Harrison, Zeke Harrison, Zoey Harrison, Terry Hauk, Steve Hauk, Lisa Hollomon, Matt Hollomon, Geni Hubbard, Jessie Hull, Jeff Hull, Genneia James, Jaylen James, Jordan James, Annmarie Naples, Anthony Naples, Cecilia Naples, Grace Naples, Kimberly Queen, Helga Queen, Kathleen Romanczuk, Rhoda Thompson, Manu Varma
– Jessica Martin, Director of Program Operations, NKI
On February 23, 2014, aka Rare Disease Day, Lisa Cimino – a member of the NephCure family and mother to FSGS patient Brianna – shared her story and talked about what living with a rare disease is like at the State House in Boston. Read her story here.
Kidney Health for All – that is this year’s theme for World Kidney Day. In celebration of this ideal, and recognition of everyone impacted by the many forms of Chronic Kidney Disease – especially our Nephrotic Syndrome and FSGS Community – we’ve collected some posts from around the web to inform and support YOU. We also ask that you take a moment to be extra mindful of the amazing organs your kidneys are, and the big job they have filtering the waste from our bodies and keeping us healthy. Help them out today with some extra water, a good diet, and some exercise.
Keep reading for some helpful links and an infographic that puts a lot into perspective.
Yoga for the Kidneys
You may know that YogaJournal.com is a wealth of information for anyone who wants to learn more about yoga. Did you know they also feature poses by anatomy? Take a look at their Yoga Poses for Kidneys for a series of movements designed to improve kidney health. Want more? There’s also a video! Namaste.
Make Staying Hydrated Fun with the Water Challenge!
Keep track of your water intake with this handy printable water challenge log from pepperscraps.com, and stay hydrated every day. Your kidneys will thank you!
Speaking of challenges, have you heard about the #SUBCselfie challenge? Started by members of the NephCure Community, the challenge is simple:
- take a selfie or make a video about why YOU choose to STAND UP & BE COUNTED to fight FSGS and Nephrotic Syndrome
- tag it #SUBCselfie
- post it to your favorite social media site
- with each video, make a $5 donation to NephCure to help us continue the fight
- challenge FIVE friends to do the same
Learn more from the founder of the challenge here!
The summer before 8th grade, I began to experience extreme fatigue. No matter how long I slept at night, I could not keep up with my friends. I often woke up with swelling in my neck, face and eyes. Sometimes I vomited for no apparent reason. My parents had been taking me to doctors for years but nobody could pinpoint the cause of my symptoms. I was tested for a variety of diseases and visited almost every unit in the children’s hospital. Finally, we landed in the Rheumatologist’s office. She told us that nothing abnormal showed up in my blood work but to come back if my symptoms grew worse or I experienced swelling in my feet or legs.
One night while I was at camp, our counselors told us to get ready to play capture the flag. I ran to put on my sneakers but no matter how hard I pushed my foot into my sneaker, it would not slip in. I looked down and realized the entire bottom half of my body, from my toes to knees, had swelled up like a balloon. The counselors and doctor on hand attributed the swelling to being out in the heat, walking around campus and eating salty foods. When I mentioned the swelling to my mom, she thought the same thing.
However, after I returned home from camp, the swelling did not disappear. In fact, it stayed exactly the same. My mom made an appointment with my Rheumatologist, who ordered blood work immediately. Two weeks later, I found myself sitting on the examination table in a Nephrologist’s office. The blood work showed I had signs of protein spillage and kidney damage. The team of doctors suspected I had Nephrotic Syndrome, a rare form of kidney disease. I could not believe this was happening. I felt as though I did not belong to my body, and instead, was watching this unfold on a movie screen. I can only describe it as an out of body experience.
I spent two days in the hospital after undergoing a kidney biopsy. The results confirmed I did in fact have a form of Nephrotic Syndrome known as Membranous Nephropathy. In everyday words, this meant I had a kidney disease and damage as a result of Lupus that went undetected for years. Lupus is an autoimmune disorder in which the body cannot tell the difference between good and bad cells. As a result, it attacks healthy tissues, such as joints and major organs.
It is difficult to describe the feelings I had while receiving this diagnosis. Part of me was confused over all the medical terminology. Part of me was sad. Part of me was overwhelmed and angry that my body had failed me. But after hearing how the doctors would treat my disease, almost all of me became scared. Along with diet and activity restrictions, I was prescribed several heavy-duty medications. Prednisone was one of the medications that would give me the most side effects. As the doctor rambled off the side effects I grew increasingly frightened. She said I would have mood swings, low energy, an upset stomach, grow “chipmunk cheeks,” and gain as much as thirty pounds – all in the course of just a few weeks after starting treatment.
I remember this like it was yesterday. After my doctor’s appointment, my mom dropped me back off at school. I did not want to show I was upset or worried, so I told her I wanted to go back to class. As I sat in my desk in the back of Mrs. LaFave’s English classroom, I stared straight ahead of me. She rambled on and on about the Masque of the Red Death and all these other Edgar Allan Poe pieces, but all I could hear was my doctor’s voice rattling off the symptoms of Prednisone. What would people think?
I was on a heavy dose of Prednisone throughout my 8th grade year. Without fail, the Prednisone showed its nasty side effects. By November, I gained about 15 pounds, was always exhausted and had round, chubby, chipmunk cheeks. As I stood in front of the mirror, I did not recognize the person staring back at me. Going to school everyday was challenging. As I walked down the hall I heard whispers. Rumors circulated about why my appearance drastically changed in such a short amount of time. “Did you have some kind of weird surgery?” random students asked me. “What’s wrong with Lauren’s face?” they would ask my friends.
I did not want to share my health problems with anyone. I was worried people would treat me differently if they knew about my disease. I did not want my teachers to feel bad for me and give me special privileges. I also wanted to appear strong for myself and my family. The last thing I wanted was my parents to worry about me.
One afternoon, I sat in the cafeteria eating lunch with three of my girl friends. I looked up and noticed the girls sitting in the next booth were staring at me. One of them leaned over and whispered something in her friend’s ear. It was clear they were gossiping about me. This was probably my breaking point. I had experienced other incidents like this before since being on Prednisone. Girls, who never cared to give me the time of day before, asked me what happened to my face. A group of kids in my math class whispered about it constantly, as if I could not hear them. When I left class every second period to go take my medicine at the nurse’s office, kids asked me why I always left class. But it was something about this one particular incident that broke me. I held in my feelings all day. By the time I walked through the door at home, I could not take it anymore. I burst into tears. My mom held me and rubbed my back as I lay in bed.
This was one of the first times in my life I felt completely shattered. It boggled my mind to think that my peers could be so critical of someone’s appearance when I had no control over it. This may seem weird to say, but during this time, I also realized I had been so blessed. My condition could have been so much worse than it actually was. I could have needed a transplant. My doctors could have put me on dialysis. I could have been admitted to the hospital for weeks instead of a few days. As I went to the hospital for my monthly checkup and blood work, I saw children who were hooked up to a million machines. Newborn babies were being poked for blood work. Children were battling cancer and fighting for their lives. I was still able to sleep in my own bed at night. I didn’t need to have different IVs pump fluids into my body. Instead, I just had to take some medicine. I could run around outside and go to a real school. My friends and I still hung out on the weekends. During this time, I was also showered by so much love and support. My parents were amazing. They made me special low-salt dinners. When I cried, they listened and wiped away my tears. My doctors went above and beyond their job description. They provided me with emotional support and hugged me after every appointment. My friends at school stood up for me when other students gossiped and spread rumors. My church family visited me in the hospital, sent cards and spoiled me with special treats.
Looking back now as an adult, I am extremely grateful for this experience. It taught me so much about myself. I learned how to be disciplined to eat healthy, get enough sleep and take my medicine on time. I learned to listen to my body and identify when it told me to slow down. As of today, I still have Lupus but my kidney disease is in remission. I am thankful everyday for a healthy body that allows me to lead a happy, normal life. It also taught me life lessons. I never judge a person based on the outside or first impressions. Everyone has a story that has shaped who they are today. Until you have walked in their shoes, it is unfair to place judgment. During the teenage years where gossip spread like wild fire, I learned just how hurtful rumors can be. I learned how important it is to be kind to everyone, regardless of how they dress, speak, or who they hang out with.
Today, I intern for NephCure Kidney International. I love interacting with patients, hearing their stories, and sharing my own personal experience with them. I realized this struggle was put in my life so I could share my story with other people.
For those who are still struggling with Nephrotic Syndrome or FSGS, there IS light at the end of the tunnel. It may not seem like it at the time, but things do get better. Those chipmunk cheeks don’t stay round forever. The kids who may be gossiping or picking on you, won’t mean a thing in a few years. Nothing is ever as bad as it may seem at the time. You will realize this experience made you a stronger person.
Each year 8,000 Americans are diagnosed with Nephrotic Syndrome, contributing to the millions currently living with some form of chronic kidney disease. It also means there are 8,000 more reasons each year for you to join NephCure in raising awareness and funds in support of researchers, clinicians, and the patients we all serve. The time to find a cure is now. March is National Kidney Awareness Month – for each one of the 31 days of this month we’re asking everyone reading this message here, on social media, or in their (e)mailboxes to STAND UP & BE COUNTED by volunteering, advocating on Capitol Hill, through donations, and helping to raise awareness.
Make every day of Kidney Awareness Month count! We’re coming in like a lion to raise awareness, raise money, raise our voices…to STAND UP & BE COUNTED alongside each and every person and their loved ones battling FSGS. Won’t you join us?
Some things you can do to STAND UP & BE COUNTED (#SUBC) this March:
- Join us in Washington on March 11 & 12 (World Kidney Day) to talk to YOUR representatives about allocating more funds for kidney diseases research
- Sign up to host or join an event on behalf of NephCure! You don’t need a special talent, just a desire to make a difference. Visit our Get Involved page for more ideas and to create or join an event near you.
- Take the #SUBCselfie challenge! Teenager Sydney Levine has challenged YOU! Sydney wants to give her brother Matthew the ultimate gift for his 12th birthday: she wants everyone to STAND UP & BE COUNTED alongside Matthew to raise awareness and money for FSGS. Sydney says it best in her video here. Join Sydney, wish Matthew a Happy Birthday, make a selfie video and call out your friends! Help Sydney reach 50,000 views by Matthew’s birthday March 31 and let this amazing boy know he has love and support. And Sydney…well, both of her parents are tireless advocates on behalf of ALL FSGS patients, and her father Michael Levine was NephCure’s inaugural Humanitarian of the Year.
Check back often for more ideas throughout March, and beyond. Want to learn more? Subscribe to our monthly STAND UP & BE COUNTED Newsletter. Together we can find a cure!
Over 400 SoCal residents came out on a picture perfect January day – the type you only see in Southern California in January – to celebrate the work of NephCure Kidney International at the 6th Annual NKI Los Angeles Walk, Brunch & Learn.
This incredible event was organized and chaired by Los Angeles Attorney Sarretta McDonough of Gibson, Dunn & Crutcher LLP and her wonderful volunteer committee that included Janet Hasson, Genneia James, Peter Daenzer and Rich Griswold. As with the past five years, this event was a true labor of love for this group and the dozens of volunteers who also dedicated their personal time on a Sunday to support NKI. With everything from an incredible Kid’s Zone with face painting, games, a photo booth and even a visit from a bonafide “Minion” (courtesy of NBC/Universal), to a delicious brunch and post-Walk educational Lunch and Learn presentation by nephrologists from three of the largest hospitals in the Los Angeles area, this event offered something for the whole family.
Beyond that, the warmth and camaraderie created a welcoming atmosphere for everyone to feel that they were part of a strong, incredible community effort to fight these conditions and a welcome reprieve from the isolation that living with Nephrotic Syndrome/FSGS can often bring. The Annenberg Beach House in Santa Monica provided the perfect venue for the Walk, family activities, lively silent auction, and of course the important Lunch and Learn with Drs. Elaine Kamil (Cedars Sinai), Kevin Lemley (USC/Children’s Hospital LA) and Sergio Infante (Loma Linda), who generously extended the question and answer session until every single person had been heard. With well over $76,000 raised and more funds coming in every day, this event was truly a success for NephCure’s important mission to fund new treatments and find the cure!