Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

NDRI

gale
0 Recommendations

They have extended the VHL tissue donation program for 6 months. If you file your DNA mutation with NDRI (tissue bank), the VHL Family Alliance will be able to mail you $100 for this very valuable donation. You do not need to be a member of the VHL Family Alliance to donate.

This is done for research. Numbers count. Here is our chance to be proactive.

The VHL mutation will no longer be passed in my family, at least the family I am in touch with. The only ones left with VHL is my self and my aunt who is 71 years old. Even though I don't have any biological children, nor expect to have any, I plan on donating all and any tissue, both alive and dead. I will not have a need for these.

At least the next generation can hopefully get more help, answers and maybe even a cure in their lives with VHL.

If you file with NDRI (US residents only), there are a number of papers to fill out. Davlyn Tang at 800-222-6374 x 242, has been extremely helpful with all my questions in filling out the paperwork. I'm also available to go over the forms with you since I have done it already. I have all the papers filled out in my possession since I faxed Davlyn the forms. If I can be of help, send me an email us-fl@vhl.org.

You just have to call her and tell her you would like to register for the VHL program. She will send you all the necessary information.

I am passionate about this program because I really think this is the break that we really need to help find answers and to help spread the word about VHL.

Won't you consider a valuable donation that can help our future generations?

Sincerely,
Gale Lugo
us-fl@vhl.org

Explore topics in this discussion:

Cancer Surgery

12 replies

minimammax4

I totally agree with you Gale! We signed up before Kortney's last surgery this year. There is alot of paperwork, but Davlyn and others were very helpful and handled just about everything for me! Kortneys Adrenal was removed and a large sample was collected for research, and she has also donated blood as well. I too encourage everyone to do this!

Beverly2

Hi Gale,

Steven's blood was sent to NDRI today! I'm very happy to get this going. The paper work was somewhat confusing...as in which papers go where...but I have to agree that Davlyn is very, very helpful.

I think that it's a good idea to do this in a time of relative health. I really wanted to donate samples from Steven's last brain surgery, but things were happening fairly fast, there was lots to take care of with the surgery, and emotions were running high. I'm glad that we have it done, as I think it will be easier now to donate for the next surgery.

Thanks for the info!

gale

Thank you to both of you for your generous contribution and to everyone else that has donated or thinking about donating or registering.

You can still register with NDRI even if someone else utilizes your tissue. All you need is your mutation (on paper). You can also register any and all folks with their own mutation. After a DNA test is performed a paper is normally given to the patient or guardian with the individual's VHL mutation. This is what is needed (a copy of course).

Register the mutation. Last I knew they were also looking for blood (they cover all costs). A little VHL humor: you know when you fill out a lot of paper work, and you ask if they want blood too? Well, in this case they do, but for good reason.

I also found the paperwork to be a bit cumbersome, but in reality you just need to fill out the paperwork in order and Davlyn will do the rest, even when it comes to mailing anything to the Alliance. Davlyn Tang from NDRI can be reached at 800-222-6374 x 242.

Even if you not register, and you want to donate tissue, they will take any tissue from a VHL patient. It is just a lot easier if you are already registered.

Won't you consider a present that is worth unwrapping for many generations to come?

Gale Lugo
VHLFA Volunteer
us-fl@vhl.org

marie3

Gale,

I spoke with Davlyn today. She is sending me the consent forms. I'm going to submit my DNA report along with a blood sample. They are very accomodating and make things as simple as possible.

Marie

gale

Marie,

That's great news! If VHL becomes popular with researchers, it should hopefully trickle down, up or sideways to doctors (wherever they are). Can you imagine someone going to a doctors office and being diagnosed with VHL on try 1 or 2.

I went to see a new neurosurgeon the other day and he knew all about VHL tumors. He didn't even blink when I mentioned it.

My primary keeps looking for VHL in other people. He actually said he was surprised he hasn't seen a new case yet. Even they are beginning to think that perhaps it's under diagnosed and not rare.

I don't know about you, but I feel when I need a surgery of any kind, at least my tissue can be used for the good instead of being trashed. I try to recycle whenever I can. :)

Wishing you well,
Gale

marie3

Gale- You are a riot! "I try to recycle whenever I can".
You are too funny. Marie

Jacki1

Hi Gale,
I'd like some clarification please...My past 10+ years of procedures have been at NIH. It was my understanding that they kept all of our "bits" for their own research, and didn't share with NDRI. I've recently joined NDRI, and in their info, it says they are affiliated with NIH. Does that mean when we have surgery at NIH our tissue will find its way to NDRI? Do we have to do anything "special" to make that happen??

Thanks, Jacki

joyceg98

NIH (the VHL study program in the internal program at the National Cancer Institute) has their own tissue collection based on the 600+ patients they have operated on over the past 25 years. It is a marvelous collection. They have traditionally been reluctant to share (that is beginning to change).

NDRI is funded in part by NIH -- the big program with 27 Institutes, of which NCI is one. While the collection is separate (in Philadelphia), NDRI follows the protocols used by NIH. Our goal is to collect samples throughout the country (and Canada) and keep them in a way that is consistent with the NCI collection so that if a researcher wanted to include an NCI sample and an NDRI sample in the same paper, they would have consistent medical data and preservation techniques and could add them together. In fact two researchers from NIH have drawn samples from the NDRI collection to add to their research.

The samples will continue to be stored separately, but can be used together. Researchers with valid studies can gain access to the NDRI collection pretty readily; they have to negotiate with Dr. Linehan to gain access to the NCI collection.

We are not trying to compete with the NCI collection --they have published a great many valuable papers based on this collection, and we hope they will continue to do so. We are trying to complement that collection by collecting samples from all the surgeries NOT performed at NCI, and any of the NCI surgeries where they do not have an immediate need for the tissue. There are certain kinds of studies where it may be appropriate for them to retain the samples at NCI. If not, then we would ask them to store the samples at NDRI to make them more widely available.

In cases where NCI has declined a patient's request to transfer the samples to NDRI, we are not pressing them.

I hope that helps. If you have further questions, don't hesitate to ask.

Best wishes,
Joyce

gale

Hi Jackie,

I actually spoke to Davlyn to ask about the association with NIH. She told me they are actually funded by NIH, but NIH does their own research with their own collection.

NDRI works with those outside of NIH and even with other countries if the need arises.

Gale

gale

I spoke to Kelly at NDRI and researchers are now asking for hemangioblastomas. Yea! If you don't need yours, surgery is coming up and you're interested, give her a call. NDRI's number is 1-800-222-6374.

Gale

Ministertammy

My husband's DNA test came back negative for VHL but the physicians at Mayo Clinic still say he has VHL because he has several hemangioblastomas in the brain and in the spine. The geneticist at Mayo and I believe that he is mosaic or has a mutation that has not been identified yet. Is there anything we can do to help research identify his mutation?

joyceg98

There is a separate discussion in this list that talks about mosaicism. (See Discussions / First in the Family) It's confusing, I know. I would be happy to talk with you about it on the phone. 800-767-4845 ext 4.

If your husband is mosaic for VHL, then the genetic alteration is not in every cell of his body, and not in his blood. They might look at the tumor tissue itself, but even then it might be difficult to pinpoint it since within a tumor additional changes occur that would muddy the situation.

If you are concerned about testing your children, they can sequence the entire gene in each child to see if there is any abnormality in their VHL genes. If one or both of them has a VHL mutation, that would confirm the mosaic status of your husband. If not, then you won the genetic lottery and your children are okay.

Best wishes,
Joyce

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You