Norwegian Forest Cat HCM DNA Research Project

We hope that 2012 will bring great things for our breed! Below you will find the timeline of events as we work with Dr Fuentes.

The below note has been shared with Jens Häggström in Sweden, Virginia Luis-Fuentes in the UK, and another contact that will get this to Hannes Lohi in Finland and we have asked them to apply. If you know of a research project currently underway with the focus of identifying a gene that causes HCM in the Norwegian Forest Cat, please encourage the lead contact to apply. We have funds currently earmarked for the this project with more funds queued up to send. We're just waiting for the right project to be selected by WINN.... Feel free to share this note. / Melissa Alexander

The grant announcement for the 2013 Winn grants will go out in July to the researchers. If you know of any researchers you want to apply, they should sign up (if they have not already) for the googlegroups listserve for researchers. They can find the information on the Winn website in the area for researchers. They would follow all of the formatting information for the proposal. The proposals are due in mid-December. The review is the second weekend in February.

Input would depend on what form that would take. The proposals are divided up for presentation by a lead reviewer (usually there are 7 or 8 reviewers) and we spend time discussing each proposal's quality as a project and study design. Reviewers are veterinarians such as myself, Dr. Little, and also researchers from Universities with unique backgrounds.This part has to be left to reviewers because they can best evaluate the science behind the project. We don't want to fund a poorly designed study that would give bad information even if the goal was important. The Winn board also participates with input and questions. Your best input is to share your hopes with board members with CFA involvement. The board is very sensitive to our donor's needs. It is possible if a proposal that supports a particular breed is approved, we may ask that breed to raise more funds in addition to what is already held in stipulated funds. It depends on how much the researcher requests and what is already present.

NEED ECHO’S AND POST MORTEMS (if applicable) OF HCM DIAGNOSED NFC’S EMAILED TO DR VIRGINIA LUIS FUENTES ASAP

I have recently corresponded with Dr. Virginia Luis Fuentes from the UK regarding next steps for studying HCM in the Norwegian Forest Cat. Dr Fuentes is at the point where she would like to closely examine echocardiograms and any corresponding necropsy documents (if applicable) of NFC’s that have died of HCM or as a result of any type of heart disease.

This information is crucial as Dr Fuentes studies the characteristics of NFC cardiomyopathy. With this information she is evaluating that if exaggerated left ventricular wall thickening is not a common feature of those NFCs that die of heart disease, we may need to adjust our echo screening criteria. Dr Fuentes has a good amount of echos/post mortem reports that she has evaluated however she needs more. She is about to submit a manuscript on the characteristics of NFC cardiomyopathy so it is important that we *EMAIL THE DOCUMENTS TO HER RIGHT AWAY*

This is really important information that will be used in NFC HCM research so if you have the following documents:

• Echocardiogram of a NFC that currently has HCM or that has died as a result of any type of heart disease
• Post mortem report on the cat (if applicable)

Email them to Dr Fuentes with the subject line “NFC HCM_<your last name>
Email address: vluisfuentes@rvc.ac.uk

It is not necessary to include me in any emails however if you need my help, please do not hesitate to ask.

This does not cost any money and only a little bit of your time. Please help if you are able – it is important.

Last night I attended the 34th Annual WINN Feline Foundation Symposium on Feline Health "Diving into the Gene Pool" with Lesley Lyons PhD and John Rush DVM ACVIM Cardiology. The presentations were very informative and I will share HCM updates specifically on the NFC HCM DNA Research Facebook page and Yahoo group lists later.

In December of 2005, Dr Katheryn Meurs agreed to work with our breed group in an effort to identify gene(s) in the Norwegian Forest Cat that causes HCM. In early 2012, members of the NFC breed group and WINN had attempted to contact Dr Meurs on multiple occasions to discuss blood samples and research updates but received no feedback. We contacted WINN to discuss this and it was suggested to WINN by Lesley Lyons that Dr. Virginia Luis Fuentes of the UK be contacted and encouraged to apply for a WINN grant this year as she has actively been working on NFC HCM research for quite some time. In speaking with Lesely Lyons last night, she stated that she believes Dr Meurs may have backed out due to the fact that our breed group was not active enough and the Sphynx breed group came at her with lots of samples and money so her focus has been on that breed. As of this date, there is just under 9,000 USD earmarked for Norwegian Forest Cat HCM Research which was donated to this project by individuals, breed groups and fanciers. I have asked Vicki Thayer to request that Dr Meurs share any previous research progress on the NFC with Dr Fuentes should she be awarded the grant and she agreed.

New research lead: Some of you may recall an email from me about a month ago requesting that the echos of any HCM cats be sent to Dr Fuentes. Many of you have done that and I know that Dr Fuentes appreciates your involvement. She is very interested in working with us therefore I am optimistic that things will work out for our breed. The grant applications will be mailed out this summer and must be submitted to WINN by year end.

Grants and funding: As mentioned previously, we have just under 9,000 for NFC HCM research. The Norwegian Forest Cat Fanciers Association in the US has voted to make a large donation (amount TBD) to NFC HCM research. The group is reluctant to send the funds at this time due to the breed group being in an inactive status with WINN. I was assured by Vicki & Janet that those funds and any future donations will remain allocated for the NFC and will not be dispersed to other accounts. We asked what WINN is looking for from the breed group as far as a minimum and we were told that $7,500 per year is what we need to raise. At this point I would like to encourage breeders and fancier to make a donation to WINN for NFC research as it will show that we are serious about finding a gene and developing a DNA test for that gene in our breed. On our Facebook page alone, we have nearly 1,200 members. If everyone on that group donated $10, we would have $12,000 for NFC research. Please consider making a donation this summer. While there is not a drop down for the NFC on the WINN donation page, I was instructed by Vicki & Janet to add "FOR NORWEGIAN FOREST HCM RESEARCH" in the additional notes section here: https://donate.towercare.com/winnfeline Vicki did say that she would ask the programer to put the NFC drop down back however it will take some time to do. Both ladies assured us that the additional notes section is checked carefully on each donation and the money would go into the appropriate fund. If you would like, you can also send me an email if you make a donation and I will email Janet as a follow-up to the NFC donations. If for some reason you are still feeling reluctant to send any large donations now, you can send a letter of intent to donate XX amount of money once a grant has been awarded to a researcher. Any such letters will be included in the packet which gets sent to the WINN board of directors for grant review and approval.

Project milestones: When a grant is awarded for breed specific research, there are certain responsibilities of the breed group to ensure the project stay funded and on track. Janet Wolf will be sending those milestones to me and I will take ownership of that portion of the project and communicate project needs to the NFC community. All you have to do is deliver those milestones, an easy task, right? In all seriousness, we all need to make a commitment to participating in the study. We have a second chance now, there may not be a third chance. Let's embrace this opportunity and strive for positive outcomes.

Screening and samples: How could I send an HCM research letter and not include a reminder about HCM screening? As we all know by now it is very important to screen our cats for HCM as this is the only way to detect a problem. When sending in samples a current echo should also be sent. In regards to samples, I mentioned to Vicki, Janet and Lesley Lyons that I understand from Jens Häggström and Virginia Fuentes that they would rather receive blood samples and not buccal swabs as there is not enough DNA on the swabs. Janet, who is a member of the Birman breed group, informed me that her group did not want to send blood samples and they found a better type of swab that their researcher was able to use. Katherine Bock will attend the CFA Birman breed group meeting on Saturday morning to get the details of this swab from the researcher. Once we have this, I will email Jens and Virginia the details and also mail them both a sample from one of these swabs and wait for their feedback on if it can be used by our breed group.

I will provide updates to the group as I have them. I encourage you to join the NFC HCM DNA Research Updates and Info group on Facebook if you are not already a member. Since there are so many breeders and fanciers from around the world on this group, it has proven to be a good way for us to communicate about HCM related topics. I will also be working on updating the NFC HCM sitewww.nfchcm.com I would also ask that you consider sharing this with breed chairs and presidents of Norwegian Forest Cat groups around the world so that it can be translated and distributed to the members of those groups. We need participation from all parts of the world in order to conduct a proper study. Thank you in advance for your support. / Melissa Alexander