Response to Ms. Cahan Director of Communications NIA/NIH

We continue to fight for our rare disease research! How can you help?

1. Sign the petition:  http://chn.ge/1bsPjZo

2. Write to your senator: http://www.house.gov/representatives/find/
Ask your senator to write a letter to NIH asking why this study was halted and to request to have study reinstated.



Dear Ms. Cahan,

I appreciate you contacting me regarding the request for reinstatement NIA Protocol 2003-086. Unfortunately your response does not address the many concerns that I have. This study was closed prematurely, without a reasonable explanation.  You stated, "The goal from analyzing these data was to identify biological pathways that might serve as targets for new treatments” Unfortunately you did not meet this goal as you would have the public believe. 

You have stated,  "We want to make it clear to participants and to the community interested in this research, however, that the data and samples are being archived and will be maintained. When the NIA has completed organizing and processing data and samples, they will be made available to qualified researchers for analyses.” 

How is this being done specifically? Will you allow the lead investigator Dr. McDonnell access to this data so she can continue this imperative research? 

I will continue on this plight for reinstatement until this study is reinstated fully and the investigators, who have expertise  of these diseases have access to the data. The 10 years worth of data is best used by the investigators who are most knowledgable about my disease.  I will not stop the petition or contacting my congress until these issues are addressed to my satisfaction.

I hope we can continue the dialogue to get this very important research reinstated immediately. Many lives depend on this research. It is very disheartening to say the least that NIA states the major goals of this study have been met, when in fact we have no biomarkers or responsible gene for this disease, not even a treatment protocol. How can it be possible for major goals to be made when NIH/NIA never brought back the participants of the longitudinal study? You had over 500 people waiting to go to the study. NIA has a responsibility to me and other patients to finish what you have started. Do not waste any more tax money or time, this work is important on so many levels.

Warmest Regards,

Kari Ulrich

Rare Disease Patient

On Dec 27, 2013, at 10:45 AM, Cahan, Vicky (NIH/NIA) [E] <cahanv@31.nia.nih.gov> wrote:

Dear Ms. Ulrich,

Thank you for contacting leadership at the National Institutes of Health (NIH) and the National Institute on Aging (NIA) about the NIA’s natural history study on inherited connective tissue disorders.  I am the Director of Communications at the NIA, and your note was forwarded to me for response.

We thank you for your interest and participation in the study. I am writing to help clarify some of the points about the study that you have raised in your note and petition, and the attached document should provide reassurance on issues of concern. While data collection has stopped, we want to assure you that the data collected over the course of the study are being organized and archived so that they can be made available as soon as possible to qualified researchers. No samples are being destroyed, unless a participant has formally asked that we do so.

Further, the attachment offers telephone numbers at NIA for patients who feel that their condition is not presently being addressed. Your communications with us suggest, however, that you are working with knowledgeable medical team.

Again, thank you and your family for your valuable time and effort participating in this study. We very much appreciate your interest in NIH-supported research.

Best regards,

Vicky

Vicky Cahan

Director of Communications

National Institute on Aging

National Institutes of Health

From: Kari Ulrich [mailto:kaulrich@me.com]
Sent: Saturday, November 30, 2013 4:01 PM
To: Collins, Francis (NIH/OD) [E]; Hodes, Richard (NIH/NIA) [E]; Gottesman, Michael (NIH/OD) [E]
Subject: NIA Protocol 2003-086 “Clinical and Molecular Manifestations of Heritable Disorders of Connective Tissue"

Dear Drs.

It is with great respect that I contact you all today regarding my petition to reinstate NIA Protocol 2003-086. I am hoping you can offer me some insight as to why this study was closed abruptly without a reasonable explaination. More importantly we have received over 5,000 signatures asking for this study to be reinstated. 

I would like to start a conversation with you about making this happen. I value your time, and look forward to hearing your response.

I remain confident that a positive resolution can be made. 

Warmest Regards,

Kari Ulrich

Albert Lea, Minnesota

Petition: http://chn.ge/1bsPjZo