Loss of Another RRP Warrior

The Recurrent Respiratory Foundation is deeply saddened by the loss of RRP Warrior, Olivia Chaparro. Olivia was a loved member of the RRP community and will be greatly missed.

 

During the 2018 Christmas season the community lost another RRP Warrior, Susan Spock.  Although Susan did not suffer from RRP herself she was an active advocate for RRP patients.  She tirelessly supported her son, Jeremy, who passed away from pulmonary RRP in September 2018.  In addition Susan served as the RRPF west coast representative for more than two decades.  She is very much missed by her family and friends.

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HPV Awareness Day 2019 march 4

The International Papilloma Virus Society along with a number of HPV partner organizations remind the RRP/HPV communities that March 4, 2019 is HPV Awareness  Day.  It is hoped by creating greater awareness of the HPV along with ways to prevent and treat it, we may be able eliminate HPV and RRP for future generations.

You can find more information at the HPV Awareness Day website: http://www.askabouthpv.org/

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In memory of Jeremy Spock

I am very saddened to report that on September 9, 2018, RRP patient Jeremy Spock passed away at the tragically young age of 35.  He was first diagnosed at 8 months old. I first met Jeremy when he was about 9 years old and was amazed to learn that this happy kid, who I played a bit of soccer with, had already endured over 100 surgeries for RRP. Over his short life, Jeremy had over 350 surgeries, but it was about 5 years ago that the RRP progressed to his lungs and transformed to carcinoma. Recently, Jeremy was part of an immunotherapy trial, which unfortunately did not work for him.

Throughout the many years that Jeremy battled RRP his parents Susan and Bob Spock were incredible advocates in seeking the best available treatments.

Although I believe that I only met Jeremy personally on two occasions, I felt so much closer to him.  Jeremy will be missed by so many of those he touched in life.

Bill

The Spock family has requested that for those who wish to make a donation in memory of Jeremy, please donate to the RRP Foundation at: rrpf.org/donate

Donations will be dedicated to pulmonary RRP research

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RRP & Avastin Online Survey for Patients/Parents

RRP Community- Anonymous Survey to Patients

 

The recurrent respiratory papillomatosis (RRP) task force is currently working to develop an expert consensus statement for the use of systemic bevacizumab (Avastin) in the treatment of RRP. We are in the process of identifying all practitioners who have experience using intravenous bevacizumab for this purpose.

If you or someone you know has been treated with intravenous bevacizumab we invite you to complete following 1-minute survey asking for the name and location of the hospital where treatment occurred. We are not requesting any personal or patient information. In no way will your personal information be linked to any email, survey, or study:

Link to Anonymous survey: RRP + Avastin Treating Hospital Information

Or copy and paste url into browserhttps://stanforduniversity.qualtrics.com/jfe/form/SV_aaa22uB5G5o443H

This is a completely anonymous survey. We cannot link your name or information to any answers you submit in this survey. There is also no way for us to identify you based on the information provided about the institution.

If you have any questions, please contact Kim McClellan at themcclellanfamily@comcast.net

 

Sincerely,

 

Douglas R. Sidell, MD

Stanford University

Department of Otolaryngology, Head and Neck Surgery

Division of Pediatric Otolaryngology

 

Background:

 

Although anecdotal evidence suggests bevacizumab to serve as a disease-suppressant rather than a cure for patients with severe RRP, it has shown great promise in dramatically reducing papilloma burden in the majority of patients with severe disease who undergo infusion. Despite this promise, many key facets of treatment remain undetermined: 1) optimal dosing concentration, 2) treatment interval and duration, 3) appropriate follow-up laboratory and/or imaging studies, and 4) outcome measures. Developing a registry for ongoing data collection is critical for understanding outcomes including biopsy results, symptom profile, pulmonary sequelae, complications, response to treatment, relapse and response after retreatment. In addition, by establishing consensus and collecting data through this process, practitioners can justify the use of systemic bevacizumab for severe RRP, as this medication is often not available at many major medical centers who provide ongoing treatment patients with severe disease.

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RRP & Avastin Online Survey for Practitioners

Dear Colleague,

On behalf of the Recurrent Respiratory Papillomatosis Taskforce, I am inviting you to participate in the development of an expert consensus statement regarding the use of systemic bevacizumab (Avastin) in the treatment of recurrent respiratory papillomatosis (RRP).

Although anecdotal evidence suggests bevacizumab to serve as a disease-suppressant rather than a cure for patients with severe RRP, it has shown great promise in dramatically reducing papilloma burden in the majority of patients with severe disease who undergo infusion. Despite this promise, many key facets of treatment remain undetermined: 1) optimal dosing concentration, 2) treatment interval and duration, 3) appropriate follow-up laboratory and/or imaging studies, and 4) outcome measures. Developing a registry for ongoing data collection is critical for understanding outcomes including biopsy results, symptom profile, pulmonary sequelae, complications, response to treatment, relapse and response after retreatment. In addition, by establishing consensus and collecting data through this process, practitioners can justify the use of systemic bevacizumab for severe RRP, as this medication is often not available at many major medical centers who provide ongoing treatment patients with severe disease.

Our first goal is to identify all physicians who have treated adults or children with RRP using intravenous bevacizumab. We request that you please complete this short (3 minute) questionnaire by clicking this link:

IV Avastin for RRP Survey

If you have not personally used systemic bevacizumab but know of someone who has we would be grateful if you could forward this on to them.

Sincerely,

Douglas R. Sidell, MD
Simon Best, MD
Karen Zur, MD
Craig Derkay, MD
Anna Messner, MD
Karthik Balakrishnan, MD

Follow this link to take the online IV Avastin for RRP Survey:
Take the Survey

Or copy and paste the URL below into your internet browser:

https://stanforduniversity.qualtrics.com/jfe/form/SV_2gydR7Ei5xtkwMR?Q_DL=cU4PAVrDJX0GcD3_2gydR7Ei5xtkwMR_MLRP_d76bQTbssMBXr3n&Q_CHL=email

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In Memory of Karen Barnes Medley

It is with much sadness that we report that 36 year old Karen Barnes Medley has tragically lost her battle with pulmonary RRP and lung cancer.

[Excerpted from a “GoFundMe” page for Karen]
Karen was diagnosed with RRP as a child. Throughout her childhood, she had countless surgeries on her vocal cords and had been in remission since the age of 10. Recently she went to the doctor as she had a faint, lingering cough that just wouldn’t quit. Her world was turned upside down when she found out the RRP came back, went into her lungs and converted into cancer.

She fought the disease fiercely and leaves behind her husband and two beautiful children.

Posted in News

Highlights of 2018 Spring RRP Meetings – National Harbor, Washington, DC

On 2018 April 19 representatives from the RRP Foundation attended and participated in the RRP Task Force meeting. On April 20, as part of the larger 2018 Spring Combined Otolaryngologic Societies Meeting (COSM), representatives of the RRPF also attended an RRP panel discussion, which included presentations from some of the leading RRP researchers. The following links provide some detailed highlights of these meetings:

http://rrpf.org/meetings/RRP_TaskForceSpring2018Meeting_HighlightsReport.pdf

http://rrpf.org/meetings/RRPPanelDiscussionCOSM2018.pdf

We were very encouraged by some of the research/clinical topics presented/discussed.

If you have any questions or feedback, please post to the RRPF email listserve or to the RRP Foundation Facebook page.

 

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In Memory of Margarita Kleinman

We are very saddened to learn of the death of 39 year old Margarita (Margie) Kleinman, who lost her battle with pulmonary RRP earlier this month (April 2018). Margie was diagnosed with RRP at the age of three and according to her father had frequent surgeries during her childhood, although he didn’t know how many or at what point the papillomas migrated to her lungs. It was in recent years that the pulmonary papillomas transformed to lung cancer. Marlene and I speak for the entire RRP Foundation in extending our sincere condolences to Margie’s family, particularly her daughter and son who are now without their mother. – Bill Stern

Posted in News

HPV Awareness Day March 4, 2018

The International Papilloma Virus Society along with a number of HPV partner organizations have designated March 4, 2018 as HPV Awareness  Day.  It is hoped by creating greater awareness of the HPV along with ways to prevent and treat it, we may be able eliminate HPV and RRP for future generations.

You can find more information at the HPV Awareness Day website:

http://www.givelovenothpv.org/

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