Our Honorary Consul Liselore van Thoor asked us to share the important information below
Dear Madam, Sir,
I received an email from the Dutch Embassy to contact Dutch Communities in my area. The Dutch Embassy was contacted by the PLN Heart Disease Foundation, based in the Netherlands.
PLN is a very serious inherited heart muscle disease that only affects persons of Dutch descent. At this time around 1,100 carriers of this disease have been identified, most of them in the Netherlands.
However, more and more PLN patients are also being identified in traditional emigration countries like the USA and Canada. The Foundation would like to reach out to Dutch communities in the US and Canada and there is where my help comes in.
Please click here to find a letter from the Foundation addressed to you with more detailed information about this very serious heart muscle disease that might be relevant to you.
I would be grateful if you could forward this information to other people. In Colorado I have asked Biertje, NASR and Dubbel Dutch to forward this information in their networks. Please feel free to share this information with people we might not reach.
More information can also be found at: www.plnheart.org
Also I received more information from Paul Heule, Honorair Consul in Michigan, who contacted Prof Stefan Jovinga, MD, Phd in Grand Rapids. This is a 4 th contact point in the USA besides the 3 mentioned in the letter. He writes that the following:
I am certainly not an expert but from what I understand is that they have been repurposing existing, approved drugs to customize the medication for the specific PLN patients. Apparently, there are multiple variations and each one needs to be treated slightly differently. His team has had some real successes.
He has agreed to make his team available for people in other regions. In addition, he has access to the gene testing lab and has been able to get people screened for a very, very low cost (primarily the counseling fee post testing).
Since this decease isn’t broad enough to warrant brand new drug development (cost for a brand new drug are estimated at over 2b from start to FDA approval) his team’s effort to repurpose already approved drugs seems very promising.
He graciously offered today that since he is fully up-to-speed on PLN and actively works PLN cases that he be a resource to others in the country.
Since time is of the essence to help those affected with the gene, this makes a lot of sense to me. I suggest that you mention the name of Paul Heulen (Honorair Consul of the Netherlands) and contact him directly with any questions you might have.
He can be reached at:
Prof Stefan Jovinga, MD, Phd
Medical Director, Cardiovascular Research
The DeVos Cardiovascular Research Program
100 Michigan Street, NE, Grand Rapids MI 49503
616 391 5725
I hope to have informed you with this.
Liselore van Thoor
Honorary Consulate of the Kingdom of the Netherlands, Denver