NIH: Keep Hope Alive and Restore Lifesaving Study
  • Petitioning Joe Biden

This petition will be delivered to:

United States Vice President
Joe Biden
Surgeon General of the United States
Regina Benjamin
Chair, Medical Executive Committee
William Dahut, MD
NIA Clinical Director
Josephine M. Egan, M.D.
Director of NIH
Dr. Francis S. Collins
NIA Director
Dr. Richard Hodes
NIA Scientific Director
Dr. Luigi Ferrucci
Deputy Director Intramural Research
Dr. Michael Gottesman
United States President
President Obama
Director of Communications NIA/NIH
Vicky Cahan
Minnesota Governor
President of the United States
Minnesota State Senate
Minnesota State House
U.S. Senate
U.S. House of Representatives

NIH: Keep Hope Alive and Restore Lifesaving Study

    1. Kari Ulrich
    2. Petition by

      Kari Ulrich

      Albert Lea, MN

The National Institute of Health (NIH) has halted the only national study on rare connective tissue disease including Fibromuscular Dysplasia, Ehlers-Danlos, Marfans, Aneurysms and Sticklers. These diseases result in severe disability and even death for those afflicted. It represented the only hope thousands of families had in finding the cause and cure for these rare disease. We are asking the NIH to restore the 10 year study.

I have Fibromuscular Dysplasia, Ehlers-Danlos and brain aneurysms, and like so many people, have lived with the stigma and suffering created by the mysterious disease. My only hope was the NIH study in which I was a participant. The study was and continues to be the only comprehensive, national study. When I received a notice the study was ending and the critical samples collected could be lost I knew I had to act. Together with other participants and health advocates I started a journey to save the study. 

Restoring the study will return hope, continuing the extensive work done over the last 10 years. It will ensure all the progress we have made will not have been in vain and keep us on a path to a cure. 

If the NIH continues with their current plan to end the study it will leave victims and their families without a place to turn for answers and send a message our lives are not worth the investment of finding a cure. Even worse, the samples and results already gathered could be lost, leaving scientists to start over.

Please sign our petition and tell the NIH to return funding to this critical study.

For information on the progress already made, please visit the NIH website: http://projectreporter.nih.gov/project_info_description.cfm?aid=8552497&icde=18270239&ddparam&ddvalue&ddsub&cr=5&csb=default&cs=ASC 

 

Note from Kari Ulrich:

Thank you everyone who has participated in signing and sharing this petition. I am not affiliated with any organizations, nor do I have any disclosures. I am one rare disease patient trying to make a difference. I do not recieve any compensation. If you would like to help spread the word of this petition you may promote this petition with a sponsored ad, button on the right. I do not recieve any funds.

A special thank you to Jason Barnaby for helping with the  wording of this petition, this has helped so the general public can understand our plight. 

Gentle Hugs,

Kari Ulrich

Recent signatures

    News

    1. The Real Advantages of Rare Disease Research

      Kari Ulrich
      Petition Organizer
      Guest Post: The Real Advantages of Rare Disease Research

      The results of rare disease research and drug development is far more than just having a pill to swallow for your disease. In the United States In September of 2013 The National Institute of Health (NIH) halted the only national study on rare connective tissue disease including Fibromuscular Dysplasia, Ehlers-Danlos, Marfans, Aneurysms and Sticklers.

    2. A Mother's Day Story

      Kari Ulrich
      Petition Organizer

      A Mother's Day Story: The love of a mother and her son's battle with Fibromuscular Dysplasia.

      http://fibromusculardysplasia.blogspot.com/2014/05/a-mothers-day-story-love-of-mother-and.html

    3. Senator Al Franken and Governor Mark Dayton show support!

      Kari Ulrich
      Petition Organizer
      Fibromuscular Dysplasia

      April 7, 2014 The Honorable Kathleen Sebelius Secretary U.S. Department of Health and Human Services 200 Independence Avenue, SW Washington, DC 20201 Dear Madam Secretary:As strong supporters of the NIH, we are contacting you on behalf of a constituent who participated in the National Institute on Aging Protocol 2003-086: "Clinical and Molecular Manifestations of Heritable Disorders of Connective Tissue."

    4. Wall Street Journal's "Hard Choices in Pursuit of Rare-Disease Cures"

      Kari Ulrich
      Petition Organizer
      Rare-disease patients urge more data gathering as tighter federal budget crimps research.

      BETHESDA, Md.-Last month, at the National Institutes of Health clinical center here, Sarah Kucharski and Fran Saplis set up a table at a Rare Disease Day event. The plan was to hand out pens and brochures about fibromuscular dysplasia, which affects the arteries and can cause complications such as high blood pressure and aneurysms. But first, they wanted to deliver a petition, and a message, to Francis Collins, the NIH's director.

    5. Thank you to School Nurses across the Nation!

      Kari Ulrich
      Petition Organizer

      Special Thanks to Deb Ilardi RN, BSN for representing our nations school nurses in supporting our research.

    6. Petition has been delivered!

      Kari Ulrich
      Petition Organizer

      It is with great joy to announce that today Dr. Collins, NIH Director was presented our petition on behalf of Fibromuscular Dysplasia, Ehlers-Danlos Syndrome, Marfans and Sticklers. The petition was hand delivered in Washington DC by Sarah Kucharski, Patient and Founder of FMD Chat, and Fran Richmond Saplis, Patient and Advisor to FMDChat... with press in toe! I was told that Dr. Collins was impressed by the amount of signatures and the organization of the petition. He also stated that we have been making noise... good noise! So Thank you to each of you who signed, shared and made this possible. This accomplishment alone has raised awareness and brought attention to those who struggle daily with rare connective tissue diseases. Please share the news!
      Gentle Hugs,♥ Kari Ulrich

    7. Rare Disease Day 2014 Patients Honor Dr. Nazli McDonnell

      Kari Ulrich
      Petition Organizer

      “She is a true professional who practices medicine for all the right reasons.”- Melva Buck

      Photo Below: In honor of Dr. Nazli McDonnell, and
      In memory of Grace Marie Berardini (1963 - 2009)
      and to those have lost their lives prematurely.

      http://fibromusculardysplasia.blogspot.com/2014/02/rare-disease-2014-patients-honor-dr.html

      Fibromuscular Dysplasia

      In honor of Dr. Nazli McDonnell, Our guest blogger today is Cathy Bowen, Founder of EDSToday.org. Cathy is an outstanding voice and leader in the EDS community. Cathy along with several other Ehlers-Danlos Syndrome advocates & patients has put into words how Dr. McDonnell has touched their lives.

    8. Patients Advocate for Rare Disease Research in Washington D.C.

      Kari Ulrich
      Petition Organizer
      Fibromuscular Dysplasia

      With this petition of over 10,000 signatures we are asking the National Institutes of Health to restore NIA Protocol 2003-086 "Clinical and Molecular Manifestations of Heritable Disorders of Connective Tissue" and allow access Dr. Nazli McDonnell and her fellow researchers access to all relevant data and samples so that she can continue her lifelong research.

    9. Minnesota Governor, Mark Dayton, Proclaims Rare Disease Day!

      Kari Ulrich
      Petition Organizer

      Thank you Governor Dayton for proclaiming February 28, 2014 Rare Disease Day in our beautiful State of Minnesota!

      "The Office of Governor Mark Dayton will issue proclamations for extraordinary state or local events that deserve special recognition from the Governor. Proclamations will be issued for events or activities that affect a broad group of people. "

      Fibromuscular Dysplasia

      Thank you Governor Dayton for proclaiming February 28, 2014 Rare Disease Day in our beautiful State of Minnesota! "The Office of Governor Mark Dayton will issue proclamations for extraordinary state or local events that deserve special recognition from the Governor. Proclamations will be issued for events or activities that affect a broad group of people.

    10. A mother shares her experience with pregnancy and FMD

      Kari Ulrich
      Petition Organizer

      Our Miracle Baby! A mother shares her experience with pregnancy and Fibromuscular Dysplasia. Read Kaitlyn Wisniewski's story here:
      http://fibromusculardysplasia.blogspot.com/2014/02/our-miracle-baby-mother-shares-her.html

      Fibromuscular Dysplasia

      Meet Nolan our miracle FMD baby. He has been a hero to many young women in the Another of the sto ry in a series of guest blogs featuring patients and families that are impacted by the closure of rare disease research by NIH/NIA. Patients are not satisfied with the response we have received from NIH/NIA.

    11. Reached 10,000 signatures
    12. Fibromuscular Dysplasia, Brain Aneurysms, Ehlers Danlos, Marfans.

      Kari Ulrich
      Petition Organizer

      My guest blogger today has a special place in my heart. It was because of Melva that the FMD/EDS overlap was discovered.

      Warm Regards,
      Kari Ulrich
      Rare Disease Advocate and Patient

      Read Melva's story here: http://fibromusculardysplasia.blogspot.com/2014/02/fibromuscular-dysplasia-brain-aneurysms.html

      Fibromuscular Dysplasia

      Another of the story in a series of guest blogs featuring patients and families that are impacted by the closure of rare disease research by NIH/NIA. Patients are not satisfied with the response we have received from NIH/NIA. We want to get the message out that closing our research affected people not just numbers in a study.

    13. Monica Dunivan, Sticklers patient shares her experience.

      Kari Ulrich
      Petition Organizer

      Written by: Monica Dunivan
      I am currently recovering from my 2 retinal detachment and at the same time my brother is recovering (not too well ) from his 4th retinal detachment. My son and my brother were both born with cleft palate pierre robin syndrone- the birth of my son resulted in the genetic testing that led to the diagnosis of sticklers syndrone. We need to get help- My oldest son is 26 and already blind in one eye and his vision is very poor in his good eye, I do not want him to go blind. My 23 year old needs hearing aides and most days is in pain from arthritis- this is something that is obviously very prevalent in our family and now I have a granddaughter- I would love for her not to have to go thru the same things that we have. Please Help with research!!!

      Fibromuscular Dysplasia

      This is one of the stories in a series of guest blogs featuring patients and families that are impacted by the closure of rare disease research by NIH/NIA. Patients are not satisfied with the response we have received from NIH/NIA. We want to get the message out that closing our research affected people not just numbers in a study.

    14. NIH/NIA must understand we are people not research numbers.

      Kari Ulrich
      Petition Organizer

      I will be doing a series of guest blogs over the next few days featuring patients and families that are impacted by the closure of rare disease research by NIH/NIA. Patients are not satisfied with the response we have received from NIH/NIA. We want to get the message out that closing our research affected people not just numbers in a study. If patients don’t fight for this study who will?
      http://fibromusculardysplasia.blogspot.com/2014/01/nihnia-must-understand-we-are-people.html

      Kari Ulrich
      Rare Disease Advocate

      Fibromuscular Dysplasia

      I will be doing a series of guest blogs over the next few days featuring patients and families that are impacted by the closure of rare disease research by NIH/NIA. Patients are not satisfied with the response we have received from NIH/NIA.

    15. Reached 9,000 signatures
    16. What exactly was lost in protocol 2003-086?

      Kari Ulrich
      Petition Organizer

      What exactly did families, patients and the medical community loose when NIA decided with no reasonable explanation to stop protocol 2003-086?
      This is what was lost: (https://gentac.rti.org/TheTeam/ClinicalCenters/NIAatHarborHospital.aspx)
      The National Institute on Aging (NIA) maintains a cutting-edge clinical research unit at Harbor Hospital, Baltimore. Under the direction of Dr. Nazli McDonnell at the NIA clinical unit, more than 800 patients from around the world have been enrolled in a natural history study of hereditary disorders of connective tissue. The patients enrolled in longitudinal follow-up receive a comprehensive 2-day evaluation, including genetic testing, medical examinations, and cardiovascular imaging studies. Many of these patients meet the eligibility criteria for and are recruited into the GenTAC Registry during their visit to the NIA facility.
      http://fibromusculardysplasia.blogspot.com/2014/01/what-exactly-was-lost-in-protocol-023.html

    17. Thank you Senator Boozman for your support!

      Kari Ulrich
      Petition Organizer

      Letter from Senator Boozman: www.boozman.senate.gov

      Thank you for contacting me to express your support for National Institutes of Health (NIH) research funding. It is good to hear from you.

      As a member of the medical community, I understand how important it is to fund medical research programs. We have made great strides in fighting many diseases in the past and will continue providing resources in the future to win the battle against many more. Despite the fact that our budget remains tight, I remain committed to NIH research programs because I know that many of my constituents depend on them for life-saving treatments. I also understand the impact these funds have on our research institutions and our economy. Please be assured that I will keep your thoughts in mind as Congress continues to debate research funding.

      Again, thank you for contacting me on this very important issue.

    18. Reached 7,000 signatures
    19. Vascular Ehlers-Danlos: David's profound message on Life

      Kari Ulrich
      Petition Organizer

      Today I want to share with you an experience that will hopefully touch your soul as it has mine. Why should we care about rare disease research? Hopefully you will find the answer in the words below. http://fibromusculardysplasia.blogspot.com/2013/12/today-i-want-to-share-with-you.html

      Fibromuscular Dysplasia

      Today I want to share with you an experience that will hopefully touch your soul as it has mine. Why should we care about rare disease research? Hopefully you will find the answer in the words below. Not too many people know this but David left us with a profound message after his death.

    20. Reached 6,000 signatures
    21. Reached 5,000 signatures

    Supporters

    Reasons for signing

    • samanda anderson TONAWANDA, NY
      • about 6 hours ago

      son has eds

      REPORT THIS COMMENT:
    • Audrei Wells BENICIA, CA
      • 2 days ago

      Audrei Wells

      REPORT THIS COMMENT:
    • Gene Mullins COATS, NC
      • 5 days ago

      I have a very special young lady with one these rare disabling conditions. We need these funds to help.

      REPORT THIS COMMENT:
    • Jessie Siegwalt HAMPSTEAD, NH
      • 7 days ago

      I'm signing this because I have EDS. I need a cure

      REPORT THIS COMMENT:
    • Melanie Burrows CHATTANOOGA, TN
      • 12 days ago

      My father has suffered since 1997 with Marfan Syndrome. His quality of life is so diminished. I don't understand how or why the government can shut down this project that has and will continue to give people hope and healing. I mean no disrespect when I say that connective tissue disorders deserve as much funding, publicity, research and genetic testing as cancer.

      REPORT THIS COMMENT:

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