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Michael Levine, NephCure Vice President

October 2, 2017 by Lauren Eva

Why I Do What I Do: Spotlight on Michael Levine, NephCure Vice President

Michael with his son, Matthew.

NKI: How did you first find out about NephCure? How did you get involved?

Michael Levine: I think my wife Dana found NephCure on the internet. That was 12 and half years ago, when my son Matthew was first diagnosed with FSGS. I think it was a few months after the diagnosis that we got connected.

The first event we got involved with was probably the Countdown to a Cure gala, with Ron Cohen and everybody from New York.

NKI: You’ve been involved both directly as a chair for so many of our events, like Countdown to a Cure New York and All In For a Cure on Long Island. What’s been your favorite NephCure event?

Michael: Well, each one is different. Quite frankly I love them all, because they all serve a purpose: to create awareness all over the country and the world, and to bring exposure to NephCure, FSGS and Nephrotic Syndrome. And obviously, the events raise dollars to try and create this miracle of a cure.

I guess my favorite event is Countdown to a Cure, because NephCure gets to put its best foot forward to so many people. Over 500 people attend, we raise over $600,000, and it’s just a very classy, professional event that is seen by so many families and patients around the country. It gives these patients and families hope. Seeing what NephCure does with that dinner, and meeting families from all over the world, it gives everybody so much hope that if we could do more events like that, a miracle of a cure is attainable.

(L-R) Michael’s wife Dana Levine, special guest Cuba Gooding Jr, and Michael at the 2014 Countdown to a Cure gala.

NKI: You have raised an incredible amount of money in the 12 years that you have been volunteering with NephCure, on the NephCure board, and chairing for so many events. Does asking for money get any easier with experience?

Michael: It never does. The only thing that gets any easier is the knowledge of what we’re doing. Talking about what NephCure does and what our goals and dreams are, that gets easier because I talk about it so much. And telling my story gets easier only because it’s so engrained and enveloped in me.

But for me, asking for money is not something that gets any easier. It’s very hard for me to do because I’ve never been a person who is big on asking for help. Many of the fundraising experts say that it should get easier, because you’re asking for money for a very good reason: you’re asking for money to fund a cure and save lives. But for myself personally, it never gets easier.

NKI: Is there anything that you think to yourself just before you initiate that first conversation that helps you get past that feeling that it’s going to be tough to ask for money?

Michael: Well every time I ask, I say to myself, “Think about all the warriors around the country and around the world battling FSGS and Nephrotic Syndrome.” All the people who reach out to me on Facebook with their families’ and children’s stories. All of the Humans of NephCure stories on Facebook, which I read every single week.

You know, sometimes it’s not easy. Sometimes it’s overwhelming. And there are some days that I say, I can’t do this anymore. But then I think about all the families and children that are battling this horrible disease, and I don’t want them to go through the same living hell that my family has gone through over the past 12 years. So that’s my motivation.

There are two phrases that I always carry around when I do this. First of all, when I find out that somebody has made a donation to NephCure for an event that I’m a part of, I always write back to them, “You’re an angel on our shoulders. You allow us to dream that a miracle of a cure is possible. You give us hope against the greatest odds, and you give us the strength to fight every day.” I write that to everybody.

Matthew Levine, Yankees Manager Joe Girardi, and Michael at a Yankees pre-game press conference this year.

I also often write to people, “We are delivering dreams, miracles, wishes, and cures to the warriors around the world battling two devastating kidney diseases, FSGS and Nephrotic Syndrome. These diseases have no cure, and destroy kidneys, families, and lives in their path.”

Whenever I think of those things—that’s what motivates me to tell my story to ten people a day, and to ask people for help and to donate money, and to ask people to attend all these events around the country.

NKI: What kind of advice would you give someone who wanted to do a big event, like a gala, for NephCure?

Michael: The first year is the toughest. You just have to get through that. After the first year, when people see how heartfelt you are and see that you’re trying to deliver dreams, miracles, wishes, and cures, it will get easier.

NephCure, FSGS and Nephrotic Syndrome need a ton of awareness and exposure and a ton of dollars. So grab some friends, family and business associates, and say, “I want to save some lives today. I want to create a miracle of a cure for the children and adults battling FSGS and Nephrotic Syndrome.”

Whether it’s a bowling tournament, a sporting event, a golf outing, a lemonade stand, a gala, a dinner, just grab some people, form a committee, start having some meetings, and have that committee invite their friends, family, and business associates to the event. It’s like a mushroom, or a plant—it will grow. After you get through the first year, everyone who attends in year one will invite more people for year two, and it just expands. If you want to create a miracle of a cure for FSGS and Nephrotic Syndrome, just create an event. You can do it anywhere in the world.

You might not raise that much money, awareness, or exposure in year one. But it’s the stepping stone to years 2, 3, 4, and 5. And maybe by year 4, 5, or 6 you could be like the Tampa Pig Jig, where they’re raising $800,000 and have 6,000 people attending their event. You can’t get discouraged; you just have to fight through it. Just get started. I think that’s the best advice I can give.

NKI: You make something that might seem complex to someone who has never done it before seem very attainable and possible.

Michael: It’s very possible. You could start an event anywhere, and every dollar you raise brings us one dollar closer to a cure. You’ll get so much out of it, knowing that, and all of your friends and your family can be involved in it with you. And when the event is over each year, the fulfillment of saving lives by doing an event is incredible.

I would just like to add that NephCure has been a godsend to my family. With all the events that NephCure puts on—the Nephrotic Syndrome Symposia, the conference in Chicago, and all the walks and events and the visits to Capitol Hill—all these events bring awareness and exposure to the disease, and they allow us to dream that a miracle of a cure is possible. All these events allow us to participate in so much and know that we’re making a difference. The doctors that are involved, the scientific advisory board, everybody at NephCure—my family considers them angels on our shoulders because they give us hope that one day a miracle of a cure can be found. You really are making a difference.

And I would just stress to people to get involved. People think NephCure just needs money. And we certainly do. But there are so many other ways to help—with your businesses or your workplace; it doesn’t always have to be money. Money is great, but people can also donate their time, goods, services, and supplies. They would be giving hope to so many people. Just get involved in some way.

Michael and other NephCure board members and supporters ring the opening bell at the New York Stock Exchange on Aug. 15th, 2014.

We are so grateful and lucky to have someone as committed as Michael on our board. Michael continues to devote an incredible amount of time and energy to NephCure each year. We salute you and your work, Michael! Thank you for your dedication to finding better treatments and a cure for all who suffer from FSGS and Nephrotic Syndrome.

The Countdown to a Cure gala will be on Pier Sixty in Manhattan on Nov. 9th at 6pm. We invite you to attend, meet Michael, and help us change lives. You can visit the event page here. If you have any questions, please contact Lorraine Mackin at LMackin@NephCure.org.

Filed Under: Uncategorized Tagged With: Community, FSGS, Fundraising, Get Involved, NephCure Kidney International, Volunteer

Research Opportunities at the NIDDK

August 1, 2017 by Chelsey Fix

Research Opportunities at the NIDDK

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is the branch of the National Institutes of Health (NIH) that focuses on funding research related to FSGS, Nephrotic Syndrome, and other kidney diseases. In 2016, they funded $574 million worth of research projects, and they continue to be a leader in clinical trials.

Currently, there are two clinical trials being held at the NIDDK that are relevant to the Nephrotic Syndrome community:

  • Rituximab Plus Cyclosporine in Idiopathic Membranous Nephropathy
    • Goal of the study: To determine the safety and effectiveness of combining rituximab and cyclosporine to treat membranous nephropathy
    • Eligibility:  Individuals 18 years of age and older who have been diagnosed with membranous nephropathy based on a kidney biopsy done within the preceding 24 months, and who have had excess levels of protein in the urine for at least 6 months based on urine and blood tests.
  • Immune System Related Kidney Disease
    • Goal of the study: This study will  provide information about the causes and specific abnormalities associated with autoimmune kidney disease
    • Eligibility: Adults and children with immunologically-mediated renal diseases, proven or suspected.
  • Genetic Markers for Focal Segmental Glomerulosclerosis
    • Goal of the study: To develop a molecular understanding of racial differences in the incidence of podocyte diseases
    • Eligibility: Individuals (adults and children) of African-descent with FSGS: renal biopsy showing FSGS or collapsing glomerulopathy, including HIV-associated collapsing glomerulopathy (HIV-associated nephropathy).

You can learn more about these clinical trials and other opportunities by using our clinical trial finder, called Antidote. 

Filed Under: Uncategorized Tagged With: Clinical Trials, Get Involved, NephCure Kidney International, patients, Research, Research News

Laci Weatherford, Volunteer Walk Leader

August 1, 2017 by Lauren Eva

Why I Do What I Do: Spotlight on Laci Weatherford, Volunteer Walk Leader

Laci Weatherford is now in her 7th year as a volunteer leader for the St. Louis NephCure Walk. Her incredible efforts have helped grow the walk to a massive event, with more than 100 people in attendance and raising around $15,000 each year! We spoke to her recently to learn about her journey with FSGS and how she manages such a successful fundraiser.

NKI: How did you become involved with NephCure? How long have you been involved?

Laci at the St. Louis Walk in 2012.

Laci: I believe the first time I found NephCure was in 2009 when I was diagnosed with FSGS. I researched on the internet and found the NephCure website. I must have provided my information and said I would like to get involved, because in 2011 I received an email saying they were going to have a walk in St Louis. The email asked if I would like to be on the committee. I said yes. The day I was on my first planning committee call, I discovered I was the committee, the only volunteer for the event that was about a month away. So that year I learned the very basics of putting together a walk and have been working on improving and growing our annual event ever since.

NKI: Why do you devote your time and energy to this cause? If you feel comfortable explaining, what’s your personal connection to kidney disease?

Laci: After I was diagnosed in 2009, I began my personal journey with FSGS and learned firsthand the terrible side effects of the drugs available and the lack thereof. I learned how precious the little things were and struggled to just get by day-to-day, enjoy my 2 year old baby, and take care of myself. I began to read more on the internet about this disease: sometimes it would be good and encouraging, sometimes not. It quickly became too overwhelming to read the stories from parents who had children struggling with these drugs and side effects. It broke my heart, and I felt it was so unfair. I had lived a good life up until my diagnosis; I enjoyed my childhood, but they were being robbed of simple joys.

I received a referral for a specialist in NY and became so encouraged by his accomplishments and his knowledge of the disease. I have tremendous hope and belief the cure and proper treatments are out there. We just need the right people to have the right tools to make it happen. It takes a lot of work to put all the proper channels in motion, and I’m so grateful NephCure is there doing the work to keep progress in motion. I want to do what I can to help fund this process.

Laci and members of Team Brayden at the 2016 St. Louis Walk.

NKI: What’s the hardest part about being a walk leader?

Laci: The hardest part is getting the word to participants. Since this is a rare disease, not many people have ever heard of FSGS or NephCure. Unless you or a loved one is personally impacted, then you are probably not looking for another charitable event to go to. I’ve got to find a way to find the patients and their families. Doctors aren’t willing to help most of the time because of HIPAA policies and various other reasons.

NKI: What’s the best part?

Laci: There is so much that warms my heart about the event. The first is my family. They drive 3 hours just to be in St. Louis with me on this special day. They also coordinate 75% of the activities and volunteer in any area I need. If it wasn’t for them, I literally couldn’t do this. Second is seeing the other patients. To see them smile and enjoy a day dedicated to them encourages me to keep going. I also love to see the growth in the event, which is the proof we are getting the word out there. My first walk had about 20 people and we raised around $2,400. The walk is now averaging between 100-120 people each year and we raise on average $15,000. That is just amazing to me.

NKI: What has surprised you the most throughout your years of leading this walk?

Laci: I’m surprised by how generous and easy is it to get donations. Most of the time all you have to do is ask. There are so many business that will gladly give you a gift card, services, or products to help you raise funds. There is no secret to fundraising or formula for getting donations—all you have to do is ask! Mostly likely you are going to get a yes.

Laci, center, with family and friends at the 2016 St. Louis Walk.

Congratulations and a big thank you to Laci and her supportive team for their incredible efforts each year! With their help, we are one step closer to finding better treatments and a cure for FSGS and Nephrotic Syndrome. We couldn’t do it without them!

Interested in volunteering at a walk or creating a walk team? Great! Just email us at events@nephcure.org to get started.

Filed Under: Uncategorized Tagged With: Community, Fundraising, Get Involved, NephCure Kidney International, patients, Walk

NephCure Funded Research: Dr. Martin Pollak’s Lab

January 30, 2017 by Chelsey Fix

NephCure Funded Research: Dr. Martin Pollak’s Lab


Through generous donations from the NephCure Kidney International community, NephCure has been able to support Dr. Martin Pollak’s kidney disease research at Beth Israel Deaconess Medical Center (a Harvard Medical School teaching hospital) since 2007. Dr. Pollak’s lab works on identifying genetic causes of kidney diseases, like FSGS. They have made some very exciting progress over the past few years, leading to Dr. Pollak’s election into the prestigious National Academy of Sciences in 2014.

Dr. Pollak’s research has identified that two common variations in the apolipoprotein L1 (APOL1) gene impart up to a ten-fold increased susceptibility to FSGS among African Americans. African Americans and others of recent African ancestry suffer disproportionately from chronic kidney disease: although they make up 13% of the U.S. population, they represent 35% of all individuals on dialysis. Other researchers have calculated that 1 in 8 African Americans are at risk for developing kidney disease due to APOL1—stark numbers that may indicate that some forms are FSGS would not be classified as a “rare disease.”

But the research being done at Dr. Pollak’s lab may one day help prevent treat—and prevent—this disease from occurring. Dr. Pollak was recently featured in an article on SFGate.com as saying that “We want to put our own [kidney disease research] division out of business by preventing this disease to begin with.”

We are thrilled to offer a “progress report” on this work directly from Dr. Pollak’s lab. We spoke recently with Andrea Knob, a genetic counselor, clinical research coordinator, and key player in Dr. Pollak’s study, who gave us some background on the work the study is doing, what we can expect from this lab in the future, and how you can get involved in this research yourself.

Q: What is the goal of the research being done in Dr. Pollak’s lab?
Andrea: The purpose of our study is to learn more about the causes of kidney conditions including FSGS, Nephrotic syndrome, unexplained proteinuria, and renal failure by studying genetics. We identify and study genetic factors that may contribute to the development of these conditions. We hope that this will further the knowledge required for scientists to develop better treatments in the future.

Q: What is your role at Dr. Pollak’s lab?
Andrea: I am the clinical research coordinator for Dr. Pollak’s lab. With my background in genetic counseling, I help patients and families navigate the research process, assist them in documenting their personal and family health histories, and serve as a resource for any questions surrounding genetics and research. I am the liaison between our patients/families and our physicians/scientists.

Q: What do you enjoy about CKD research?
Andrea: Every person and family has a story to share, and this information is so valuable and so important. It is amazing to witness this generosity, and to be a part of a team that is so dedicated to making progress in this field. Research answers the questions that otherwise would be left unknown, and that in turn provides hope.

Q: What is APOL1?
Andrea: APOL1 is one of several genes that we study in the Pollak lab. Variations in this gene have been found to confer resistance to trypanosomiasis, a serious disease in some African regions, and as such these variations have risen in frequency in parts of Africa. We are investigating how these gene variants contribute to kidney disease in persons of African ancestry.

scientist doctor hand holds virtual molecular structure in the lQ: Why did the lab decide to focus on APOL1?
Andrea: APOL1 is one of several genes that we study as we try to learn more about the causes of FSGS, Nephrotic syndrome, and related conditions in patients and families. Our lab’s interest in the genetics of FSGS led us to explore the basis of the high rate of FSGS in persons of African ancestry. Certain specific variations in the APOL1 gene contribute to this disparity.

Q: What impact can diagnosing an APOL1 mutation have on treatments for patients?
Andrea: We need to learn more about genes, including APOL1, that may contribute to the development of kidney disease. (We also think there are more to be discovered!) Diagnosing a gene mutation helps doctors determine who might be at increased risk of developing kidney disease. While it may not affect the treatment for patients at this time, the goal is to acquire the information we need about these gene variations in order to develop better treatments in the future.

Q: What is involved for patients in this study?

Andrea: Participation involves a questionnaire, a saliva sample, and a urine sample (if possible) that can be given from home. (If participants prefer to give a blood sample instead of a saliva sample we can help arrange this.)

Q: Who can participate in this study?
Andrea:
• Anyone with FSGS, Nephrotic syndrome, or unexplained proteinuria
• Anyone with a family member who has FSGS, Nephrotic syndrome, or unexplained proteinuria
• Anyone with African ethnicity with non diabetic kidney failure
• Any healthy individual without kidney disease

Andrea Knobb- Genetic Counselor and Study Coordinator for Dr. Pollak's study

Andrea Knob – Genetic Counselor and Study Coordinator for Dr. Pollak’s study

Q: How do I get more information about the study?
Contact Andrea Knob with any study related questions by phone at 617-667-0467 or by email at aknob@bidmc.harvard.edu. You can also read more about the research study by clicking here. 

Filed Under: Uncategorized Tagged With: Clinical Trials, FSGS, Genetics, Get Involved, Membranous Nephropathy, Minimal Change Disease, NephCure, NephCure Kidney International, nephcure-funded research, Nephrotic Syndrome, patients, Research, Research News, Study

August is Advocacy Month

August 1, 2016 by Chelsey Fix

Be an advocate now! Meet with your legislators locally during the upcoming congressional recess to educate them about Nephrotic Syndrome and FSGS and to ask for their assistance with key legislative and policy issues.

Background
Members of Congress will be in their districts throughout the month of August. Legislators use this time away from Capitol Hill to meet with their constituents in their local offices and learn about the issues impacting the people they represent. Advocates for NephCure Kidney International can use this opportunity to schedule meetings with the local offices of their members of Congress to educate legislators about Nephrotic Syndrome and FSGS and how they can assist and support affected individuals. You do not need to be an expert in government to be effective, you just need to be willing to tell your story. NephCure will assist you with the rest. Taking action is easy:

  1. Inform NephCure of your interest in making a local congressional visit by emailing cfix@nephcure.org.   NephCure can help you locate the contact information for the local congressional office near you and assist you with scheduling a meeting.
  2. Consider making a local visit as a group, with other patient families from your area or with your friends, family, colleagues, or neighbors.
  3. Review NephCure’s legislative agenda, and ask us any questions you have about the issues by emailing cfix@nephcure.org. 
  4. Meet with the local office, tell your story, ask them for their assistance on key issues, provide them with the leave behind materials, and then report back to NephCure by completing this evaluation form.

About the Issues
Each year, NephCure outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare. This year, NephCure has outlined the following issues as part of our legislative agenda:

  • Provide $38.1 billion in fiscal year 2019, a $2 billion increase
    • Provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the branch of the NIH that would most directly support NS and FSGS research.
    • Provide a proportional increase for the National Institute of Minority Health and Health Disparities (NIMHD). Minorities are disproportionately affected by NS and FSGS, and this branch of the NIH could provide specific funding opportunities and training programs to benefit the community.
    • Support rare disease research at the National Center for Translational Sciences (NCATS).
  • Continue to include FSGS as a disease eligible for study through the Department of Defense’s Peer Reviewed Medical Research Program 
    • As a result of this funding opportunity, over $2 million has gone to FSGS research
    • The NKI community must continue to advocate in order for FSGS to be included every year
  • Co-Sponsor the “Chronic Kidney Disease Improvement in Research and Treatment Act of 2017 (H.R. 2644)”.
    • This bill is aimed at improving the lives of individuals with chronic kidney disease by supporting research that identifies and eliminates barriers for transplantation
    • This bill allows individuals to retain access to private insurance
    • This bill is promotes access to home dialysis, which is associated with higher quality of life and better health
    • Finally, this bill pays particular attention to chronic kidney disease in minority populations and aims to improvement access to treatment for underserved areas

This agenda is comprised of contemporary legislative and public policy issues impacting the kidney community. However, to be successful in your meetings you will not need to remember complicated political information, you just need to tell your story. The materials below can help you have a productive and effective meeting with your Senators and Representatives.

Toolkit for Successful Meetings

  • How To Guide for Meeting With Your Legislators
  • NKI 2018 Legislative Agenda
  • Advocacy Letter Template

Filed Under: Recent News Tagged With: Advocacy, Engagement, Get Involved, Nephrotic Syndrome, Volunteer

Your Advocacy at Work – New Funding for FSGS Research

May 12, 2016 by Chelsey Fix

Since 2014, NKI and our dedicated community of patient advocates have been encouraging Congress to include FSGS on the Department of Defense’s list of conditions eligible for research funding through the Peer Reviewed Medical Research Program. Learn more about these efforts here.

Directly as a result of our advocacy, FSGS was included on the list in 2015 and 2016. This new stream of grant funding gives FSGS researchers access to up to $278 million in grant awards. Last year was the first year that FSGS researchers were able to submit grant applications for this new funding stream and recently, the DoD  announced which of those applications were recommended for funding. We are thrilled that five FSGS projects made the list!

FY 2015 Discovery Award

Suzie Pun – University of Washington

FY 2015 Investigator-Initiated Research Award – Partnering PI Option

Ali Gharavi – Columbia University Medical Center

Simone Sanna-Cherchi – Columbia University Medical Center

Suzie Pun – University of Washington

Stuart Shankland – University of Washington

We can’t wait to tell you more about the winning projects for 2015 and look forward to even more success in the 2016 cycle.

In order to ensure that FSGS continues to be included as an eligible condition each year, we must continue to advocate. Stay tuned for more information about what you can do to help!

Filed Under: Uncategorized Tagged With: Advocacy, FSGS, Get Involved, Grants, Research

Every gift has a story.

November 23, 2015 by Lauren Eva

Use new eCards to tell someone you love that you care about them.

Filed Under: Recent News Tagged With: FSGS, Fundraising, Get Involved, NephCure Kidney International, Nephrotic Syndrome, Research

2015 Countdown to a Cure – THANK YOU!

November 20, 2015 by Jessica Martin

We’ve said “hello” and “goodbye” to another Countdown to a Cure…

Bravo Events - 2015From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt speeches delivered by NephCure’s beloved family, the Jones’ and honoree, Olympic athlete Aries Merritt, this event was truly the “Chance of a Lifetime” to make a difference in the fight against Nephrotic Syndrome. The success of Countdown has always been measured by the generosity of the many hundreds in attendance who consistently show support for NephCure and this year, our expectations were overwhelmingly exceeded, for which we could not be more grateful. You are changing the story.

Red Carpet, Nephcure-6

Energies were high and attendees were excited, lighting the way for one of the most successful galas in NephCure history. “Fund a Cure” donations blew expectations out of the water, bidding was at a high and the second annual game of “heads or tails,” brought a touch of silliness to an evening surrounding a very serious cause. Emcee, Moody McCarthy, along with “Asbury Fever,” a Bruce Springsteen Tribute band, kept the party going all night long with many moments filled with laughter, dancing and mingling.

DSC_0383

As always, we want to thank the committee who worked so hard to put this event together and the volunteers who generously gave up their time to help this event flourish into a huge success. The 2015 New York Countdown to a Cure raised over $750,000 and many left the event feeling inspired and hopeful.

Finally, thanks to YOU. To each of you reading this who’ve decided to join us in this fight.

We can’t do this alone.
We need you, we’re grateful for you and we thank you.

BRAVO EVENTS -- "NEphcure Event" -- Pictured: (l-r) -- (Photo by: Heidi Gutman/Bravo)

Filed Under: Recent News, Uncategorized Tagged With: Advocacy, Community, Countdown, FSGS, Fundraising, Get Involved, NephCure, NephCure Kidney International, NKI, patients, Research, Volunteer

INSIDE LOOK: 21st Century Cures

July 15, 2015 by Chelsey Fix

What is the 21st Century Cures bill?

Co-sponsor of the bill, Fred Upton, describes our current situation as such: patients who need “the next generation of treatments and cures, but they do not have until the next generation to wait.”

This bill was designed to update, and effectively, accelerate the drug development process. It is funded by the federal sale of oil from the national reserve.

 What does this bill actually do?

  • Guarantees 8.75 billion dollars to the National Institute of Health (NIH)
  • AND, 550 million dollars to the Food and Drug Administration (FDA) over the course of the next five years

In that regard, 21st Century Cures will be a huge win for the rare disease community by:

  • Ensuring mandatory funding for the NIH
  • Providing funds to the FDA to streamline the clinical trials process
  • Incentivizing the development of “orphan products,” which are medical products intended for the diagnosis, prevention, or treatment of rare diseases
  • Paving the way for the development of new cures and treatments for the 7,000 rare diseases—including NS—which currently have no approved treatment

Now that I know what the bill does, what can I do?

The legislative initiative, 21st Century Cures, was passed in the House on July 10, 2015.  HOWEVER, our work is not finished. Before this bill can become a reality, it must also pass the Senate.

Stay tuned for advocacy alerts from NephCure to see how you can get involved! 

Filed Under: Recent News Tagged With: Advocacy, Get Involved, Research

Debunking Clinical Trials Myths

May 29, 2015 by Chelsey Fix

clinical trial mini infographic

MYTH:
Participating in a clinical trial will just make me a “human guinea pig”

FACT:
A common fear is that those giving you care in a clinical trial won’t treat you like a person or a patient. However, the opposite is true. Participating in a clinical trial gives you access to some of the best care available to patients. Also, strict ethical and regulatory guidelines are in place to ensure that each participant is treated fairly and respectfully, not to mention that all drugs in clinical trial phase go though a vigorous testing process before they are approved for use in a clinical trial.

 

MYTH:
I like my doctor, and if I participate in a trial, I won’t be able to see them anymore

FACT:
This is not true. Participants are encouraged to continue seeing their regular doctor in addition to any appointments they may have with the trial staff. A physician on the clinical trial staff does not replace your regular doctor.

 

MYTH:
If I participate in a clinical trial, I’ll have to go off of the medications that keep me in remission

FACT:
Each trial has a different protocol, or set of rules. Some trials have a protocol that allows participants to stay on current medicines. Or, if a trial asks participants to stop taking their current medications, participants are closely monitored and immediately given their original medicine and dosage if their symptoms worsen. The health of each participant is top priority for every clinical trial team.

 

MYTH:
There are no trials happening near me, therefore I can’t participate

FACT:
There are currently 17 clinical trials that are recruiting patients with Nephrotic Syndrome diseases at nearly 300 sites throughout the United States. If there is not a site close to you, many trials will pay for your travel (like the DUET study!).

 

MYTH:
If a clinical trial will help me, my doctor will tell me about it

FACT:
While we all love our doctors and respect their opinion, the truth is that they are extremely busy. We can’t expect them to save lives everyday and remember every clinical trial going on. Sometimes doctors just don’t know about clinical trials, or are unsure if their patients are interested. The best approach to participating in research is to do some research yourself and then take questions to them. If your doctor is unaware of a trial, they can find out more information and help you make a decision. However, please remember that only YOU can make the decision to advance research to help find better treatment options by participating in a clinical trial.

Click HERE to learn more about clinical drug trials 

Filed Under: Uncategorized Tagged With: Clinical Trials, Get Involved, patients, Research

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NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.

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